Pictures of the Autism walk

School pics and a couple others

Why can't we all just get along?

Ah....That's better.

School Time

Thomas started school yesterday. This is the autism preschool that is 2 ½ hours 4 days a week and they have 6 kids, 1 main teacher and 2 aids (trained in autism), and a ST and OT that are in and out of the classroom. Everyone said he did really well. It was so hard putting him on that school bus. The aide and the bus driver were really nice. He seemed a little confused as to what was happening, but he didn’t cry. We was even a little excited this morning for the bus. Everytime I mentioned that the school bus was on its way, he would hug daddy really tight, but he had a huge smile on his face. So sweet. Of course, I have no pictures. Yesterday it was just me and Thomas waiting for the bus and it was raining. Then this morning I brought the camera, but the battery was dead. Hopefully I’ll get one tomorrow. And of course after he left and I was on my way to work, I couldn’t believe I forgot that my cell phone has a decent camera. Oh well.

He’ll also keep getting the school therapists going to the daycare. They are working through the Birth to 3 program, and the preschool is through the 3-5 program. Since he still qualifies for the birth to 3, he’ll continue to get that therapy every other week. It’s so nice that he’s getting so much service now. I went back and was regretting not putting him in the ABA program. I really think he would have done well there, and even thrived there. But I didn’t think it was the best thing for him. I kept second-guessing myself, but now that he’s in this program, I really think it is the best thing for him. And it won’t cost me $400/month. The money was not the most important thing, although it did enter my mind. After all the money problems we had and the bankruptsy and everything, we’ve gotten back on our feet and it is nice to say that we could afford that. But I just didn’t think it was the right thing for them. I can’t even say why, because it was an awesome program that I have already recommended to other people. I just know I’m doing what is best for Thomas and I have to stick with that. And I am very happy with how everything has turned out and what services he is now getting.

We’ve been hearing so many more words, mostly ones that he repeats, but will not use spontaneously. He was starting to say some colors and use them appropriately, but only if we would say them first. For example, we would point at something yellow, and then he would say yellow, and then he’d say yellow again talking about another thing that’s yellow, but after doing the other colors, we’d have to remind him how to say yellow again. I think that he now knows what a lot of these words mean, but he forgets how to physically say them. At least that is my impression of watching him. Anyway, he said several of the colors, and he’s started saying train spontaneously and he pointed at a flower on TV and said flower. That’s one that I know I didn’t teach him, so it was cool to hear.

I don’t think I ever mentioned this. It was about a month or so ago and I’d let Thomas watch TV while I cooked dinner (just about the only time he gets to watch TV), and I forgot to turn it off when we sat down to eat. It wasn’t very loud and I didn’t even notice it was on. We were just sitting there eating and suddenly Thomas gets this look on his face, like he was up to something, then he starts shaking his arms and saying “wiggle, wiggle, wiggle”. Then he’d stop and say “meeeee…..wiggle, wiggle, wiggle.” It was so cute watching him wiggle. By the time I figured out it was the TV, the song was over. But a couple nights later, I forgot the TV again, and he did it again. It was absolutely hilarious. Now I just try to get him to do it every now and then. It’s a song they do at daycare every now and then. It’s great. They do a lot of taped group songs, like the bear hunt. Everybody remember that one? We used to do it in elementary school. Thomas does most of the motions and everything too. He really enjoys those things. It’s so nice to see. I love seeing him participate in the activities with the other kids, and the music really is something he likes.

It’s so nice to see the progress that Thomas has made since February when he first started therapy. He has grown so much and has made tremendous progress. It’s amazing to see the difference. Getting ready to start the preschool program they did a new evaluation. The first since January. It was really hard to read that report. I know that he’s made so much progress and he’s doing so well, but to hear that my son is in the bottom 1% of his peers in his combined receptive and expressive language according to the standardized test…it hurts! I just need to stay positive and focus on the progress and the good things. That’s hard sometimes. But he is the most wonderful kid ever and he has a very bright future. I’ll make sure of it.

Did you know...

More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.

Scary, huh?

Now lets consider research funding:

Leukemia:
Affects 1 in 25,000
Funding: $310 million

Muscular Dystrophy:
Affects 1 in 20,000
Funding: $175 million

Pediatric AIDS:
Affects 1 in 8,000
Funding: $394 million

Juvenile Diabetes:
Affects 1 in 500
Funding: $130 million

Autism:
Affects 1 in 150
Funding: $42 million

Source: www.AutismSpeaks.org

Update and a couple weird new words

I’ve really been slacking lately. I keep meaning to update but….. The autism walk was really fun. There were a lot of people there. I was able to let Thomas run around for a little bit without having to worry about losing him. I think Thomas had a good time. When it was time for the actual walk, we mostly walked with Thomas on our shoulders because he was tired from running around beforehand. All in all, it was a good time.

We are finally gearing up to start Thomas in the autism preschool. Our final meeting with everyone is Monday, so we’ll get details then. I’m really nervous. He’s going to have a great time and I’ve heard nothing but good things about the program. But still, he’s only two and he’ll be riding the school bus and will be at the Elementary school and it’s just a little scary for me. I still have not looked at the school myself. Sam really liked it, but I think I need to get over there one of these days to actually see how everything works. I wonder if they would let me go with him on his first day. I might be more of a distraction than a help.

We’re hearing a lot more words from Thomas although very often we aren’t sure of what the words are. He sometimes even talks in short sentences, where he is obviously saying something specific, but we can’t figure out what those words might be. It has become a lot more obvious that he has motor planning problems in his speech. My layman’s diagnosis is apraxia. A lot of kids with autism have apraxia, but I’m not sure it would be considered a secondary diagnosis. I don’t really know how that works. You can see that he’s working really hard sometimes to figure out how to make his mouth say a word we are working on. He’ll often just be able to say a small part of the word. Or, he’ll be moving his mouth just right, but doesn’t put the sound with it. It takes a lot of concentration sometimes. We also saw in one of the videos of our Play Project session that if he was very still, the word (“down” in that case) would be very clear. The more motion in the rest of the body, the harder it was for him to say the word. Kind of weird. I think we are only up to 10 or so words in current use (because he often loses or stops using words and/or skills as he learns new ones), but I think he is having a bit of a language explosion. I think he understands so much more and I really do think he is saying a lot that we just don’t understand yet. I think as we work more on how the different sounds are made it will help tremendously. In last night’s session, we had three new words. Very weird collection of words: Glasses, Delicious and X-ray. Delicious is a hard word to be starting with, but it was getting pretty clear by the end of the night! The cutest thing ever. We have a set of flashcards with the letters of the alphabet and X-ray was the picture for “X”, and he just started saying it over and over. If you think about it, X-ray really a fun word to say. Just ask Thomas!

Walk Now For Autism

We are doing the autism walk tomorrow through Autism Speaks. I didn't have the time or energy to form my own team and do fundraising, but I am walking with my brother Joe, who is also autistic. Joe is now 28 and he was diagnosed when he was in 5th grade. My dad will be walking and a coworker of my dad may be coming with his son who is also autistic. It's a small world. One thing I wanted to do with my blog is to have information about autism and the various treatments and summaries of the extensive research that I have done in the past 9 months or so. I just don't have much time or energy nowdays. But in honor of the autism walk we are doing tomorrow, here are some autism facts that you may not be aware of:

Autism is a neurobiological brain disorder

1 in 150 children are currently diagnosed with autism spectrum disorder

Autism is 4 times more common in boys, but tends to be more severe in girls


Autism impairs a person’s ability to communicate and relate to others


Autism is associated with rigid routines and repetitive behaviors

Many people think of “Rain Man” when they think of autism. In reality there is a whole
spectrum of autism and symptoms can range from very mild to quite severe.

A high percentage of kids with autism have gastrointestinal issues that may be affected by
diet and/or food allergies and sensitivities.

There is some evidence that autism is related to immune/autoimmune diseases

A tidbit about Minnesota and the autism rates: We have a large population of Somali in Minnesota. The rates of autism in the Minnesota Somali population are much higher than the general population. They tend to be much more severe cases. And these children are ones who were born here, not in Somalia. They do not know why. But in my opinion, this could very well be a good clue to the huge increase in rates of autism. I hope that they can figure it out soon.

Most research today indicates that the level of mercury that used to be in vaccines has not led to the increased rates of autism, though many still believe that vaccines have something to do with it. (My belief is that, in most cases (as there are always exceptions to the rules), vaccines had nothing to do with it. It just happens that the timing of the vaccines coincides with the timing of autism symptoms. Even some kids later diagnosed with autism, that were never immunized, showed a regression at that age. I do not think that the vaccines cause it. However, I would also like to see more research on a large scale, double-blind studies to examine other aspects of the onset and increase in rates of autism and how they might otherwise relate to vaccines. If nothing else, to rule out the possibility that there is a connection. As a microbiologist, I understand how horrible the diseases were that we now immunize for and honestly even if there was a clear connection with vaccines and autism, I would still immunize. But I do think that there needs to be more research.

Counting!

Thomas has been improving so much lately. I'm just loving it. One of the tricks we have learned along the way is to help him anticipate what is about to happen. When we give warnings he does so much better. For example, about 5 minutes before bedtime, we warn him that it's almost time for bed. And when it is finally time, we do a little countdown "5-4-3-2-1-all done. Time for Bed". It makes it nice and smooth. He anticipates the change, and when we do the countdown, he stops what he's doing and gets into bed. We also were advised by the various therapists to get him used to common phrases, like "ready-set-go!" and "1-2-3-go!). It has worked really well and he will count with us. Not very clearly, and not every number every time, and sometimes he won't do it at all, but it's progress. So anyway, a couple days ago, we were getting ready in the morning and he started counting his toys! He only did up to three, but that is such a big step for him!!! I am so excited! Not only did he count on his own, he has transfered the idea and words of 1-2-3-go to a number of objects. That is a huge example of how far his expressive and receptive language has come. Six months ago, I wasn't sure he understood more than a couple words of what I said. And now he is making such leaps. I am just so proud!

Colorado Pictures

I finally down loaded some pictures from our trip. These are some of the highlights.

Thomas's Pre-school Evaluation

We had Thomas’s evaluation (or at least part of it) yesterday morning. It went really well. Everyone kept remarking how much progress he made over the summer. He really has made so much progress. I’m extremely proud of him. I know it was probably the timing and the combination of all the therapy, but ever since L from Kidspeak started ST with him, he has just flourished. It was nice to hear that it was obvious to everyone else though too. During the questioning I also explained that both M from the Play Project and L from Kidspeak say he has motor planning issues with his speech (possible apraxia) and I gave them a couple examples (really studying how you are moving your mouth when you talk and when he starts getting the mouth movement it is very deliberate with a lot of concentration and often doesn’t have any sound with it). Also, this week’s session with M was at the park which was really fun and enlightening. She noticed that when he first gets of the twisty slide, or off the swing, or after holding him and swinging him around (which he loves), he falls down over and over. He’ll fall 5 or 6 times before finally getting his balance. It may just be that it was so exciting he was moving too fast, but she thinks it is a vestibular balance thing. It got better the longer we played. But that is an OT/PT thing. The OT was very interested in hearing that. She’ll be doing the OT evaluation next week so I hope that these things make a difference in her recommendation. I didn’t really like her last year as an OT, but someone else will be doing the actual therapy this year. Until he starts the preschool program that is. Then it will be part of that program or they may have the on site OT pull him out every now and then. When I told them L’s name (from Kidspeak) they all knew her and liked her so the fact that she said that he has motor planning issues may make a difference to them. Anyway, the eval went well. I have a bunch of paperwork to fill out. Our IEP meeting is Oct 20th, so it is looking like the end of October before he starts. I’m just glad that we were able to get him into the program.

Work has been really frustrating lately. I don’t know if it’s just me or what, but it seems that all the projects I work on have issues. They are not working and finding reasons is difficult. Irritating anyway.

Thomas is going to spend the weekend with Grandma and Grandpa. I’m really looking forward to it. Sam has to work, so I’ll be able to get some time to myself. I’m also going to try to clean and organize and paint the living room. I’m looking forward to it. It’s hard when Thomas follows me around as I clean and “uncleans” it for me.

Someone else to clean the house

We finally decided to hire someone to clean the house. Sam and I are both messy by nature and the house has been overwhelmingly horrible. We’ve completely lost control over it and it’s impossible to start cleaning because it’s so overwhelming. I know that our entire life has been so hectic and overwhelming lately and having a house in chaos makes it worse. So we found a college student to clean. She cleaned for five hours last Thursday. I was hoping that more would get done but the house was just horrible. I’m so embarrassed of how bad we let it get. She really did a good job and just by the look of her when I got home I could see she worked her butt off. I already feel more relaxed and I feel like being more productive. It’s great. It is expensive to have her come and clean, but really, we need it. I can’t spend all my free time cleaning the house. I need to spend that time with my son and husband. And now I can. Totally worth it to me.

Cell Phones and Lakes Don't Mix

Sam and I have been needing new cell phones for a long time. Mine finally completely died and I had to switch to one that used to be my moms. They were the free ones and several years old. So we finally got new cell phones last weekend. I was so excited. I didn’t like the free one so I picked on that was $40 after the rebate. It was red and really pretty. And then this weekend we went up north and Sam was fishing on the dock while I was taking a nap. He had my cell phone in his pocket so he knew what time it was (he’d forgotten to charge his). And then it fell out of his pocket and into the lake. I made him try to find it with the net and we dredged the bottom for it but never found it. So I had a really nice new cell phone for one week. And of course I didn’t purchase the insurance plan. The insurance plan is really expensive however, so I am going to try finding one on craigslist. It’s going to take a while for Sam to live this down. It’s kind of funny though.

School programs for a 2 year old

I went to look at an ABA program today. They are expanding and have several openings available. I really liked the place. The therapists were really nice and really good at what they do. It was nice to see ABA in practice. I’ve learned about it but it’s much different to see it in action. I don’t think that it is what I want to do though. One issue is that it is in Hopkins right now and when they move to their new location it will be in Plymouth. That’s a rather long drive. And since we both work full time we would have to use a transportation service that would be covered by insurance. I’m not sure I trust someone driving my child that far every day. It would make me nervous. I also think that Thomas does better with more active learning, a more physical environment.

So I made up my mind that I was going to start pushing for him to get into the school preschool program. I knew it was going to be a fight since they were getting in trouble for starting kids prior to age 3. But he is ready for school and I think he would thrive there. I’ve actually been making calls all week already but nobody has returned any messages. So then I got a call from Bridget, and she said that she knew we really wanted to get Thomas into the program and approached the new autism program director that just started and they said OK. So we have a meeting in two weeks to do an evaluation and then he’ll start within 45 days of the eval. I’m really excited. I just know that it was meant to be.

Update

I haven’t updated in a while. Thomas is doing really well. He doesn’t have too many new words (bye bye, one, go, down, stop), but he is doing great with his eye contact and interaction. I keep getting reports that he’s doing great at following directions too. And the times that he doesn’t, it’s not that he doesn’t understand, but because he’s being naughty, just like a normal two year old. He’s been having a few more tantrums too, probably not to the level of a normal two year old, but I still think that’s a good sign. Previously, he could be so easily distracted or redirected and it’s good that he’s being more persistant when he doesn’t get what he wants.

We had a wonderful time in Colorado. It was so nice to spend time with family that we haven’t seen in so long. He had a great time with Great-Grandpa. He would sit next to him in the chair and they would read together. It was usually a whole string of “uh-oh”s. We spent a couple days in the mountains. It was nice to get away and it was so peaceful. There is a horrible beetle killing all the trees. I would estimate that about 2/3 of the trees in the area were dead and the other 1/3rd all eaten up too, but hadn’t turned brown yet. It was rather sad. We went on a couple nice hikes. Sam had Thomas in the backpack for the first, which was a bit rockier. The second one Thomas walked for a while, with his doggie backpack harness. We ended up taking turns with him on our shoulders for the last half, but it was a short walk so that was just fine. There was a really nice overpass where we had someone take our picture. Not the greatest, but Thomas was having a hard time sitting still for that. We really did have a nice time. Grandma and Grandpa are having a harder time getting around, but I guess that is to be expected. Aunt Linda was having a really hard time with her legs too. She just seemed miserable a lot of the time. She’s always so positive, but I could tell she was in constant pain. I wish that we lived closer. She would be wonderful to work with Thomas if we weren’t so far away. I love all the stories of her classes and students. She generally taught the troubled students from 1-5th grades for many years. This year is her first year of actual retirement. She technically retired two or three years ago, but still worked part time. I think it was just getting too hard to move around. I hope they figure out why her legs hurt so much so that they can fix it. She’s too young to be moving like that.

My sister, Lily, has been having issues with her legs. It started almost three months ago and her legs just shake and twitch. She’s 32 and walking with a walker. It got much better suddenly for a week and then suddenly much worse. They have done a ton of tests and haven’t figured out anything. She seems to be handling it well, but that pretty much takes all of her independence away. She even needed help going up the one stair from the living room to the dining room. It seems like something like MS, which I guess they have not entirely ruled out. It seems at least something related. I hope they figure it out soon. Why does it seem like doctors can never figure it out?

We’ve also been hoping to give Thomas a new brother or sister. I didn’t ovulate at all with the first month of Clomid, so we are onto the second month. This month the side effects were horrible, so hopefully that means it really did something. I hope this happens quick because I’m not sure that I can handle many more months of those side effects.

My new niece Halley is the cutest thing ever. She’s finally starting to be more aware. She’s just so little. Even though she’s a month old, she still smaller than Thomas was when he was born. But he was a really big baby. I hope the next one is much smaller. The metformin I am on now is supposed to greatly reduce my risk of gestational diabetes, so hopefully size will not be the issue it was last time. Thomas did not really notice the baby or anything. I’m not sure he ever slowed down enough to even notice I was holding a baby.

We found out that we can get Thomas into an ABA school this fall, but I’m not sure that’s what I want to do. It was when we first got the diagnosis, but I’m not sure that’s the best approach for him. I am going to start fighting the school district again to get him into the autism preschool. He’s ready for it. I just think the overall approach will be better for him than the ABA approach. And if we did the ABA it would pretty much replace the services he’s getting right now, which he is doing so well with. I don’t want to do that. I would like to defiantly get him more OT, but I think I will probably just keep it the same if we can’t start the preschool. I don’t know. There are so many things to choose from and so many waiting lists and trying to figure out the right combination is really hard. I’m sure he’ll be fine though.

Doing good!

The last time I posted I was really having a hard day. I don’t feel so helpless very often, but I think it’s best to be upfront with my emotions and feelings. It makes it easier to move beyond that. He has made so much progress since he started therapy and I know that he is going to do well in life. And most importantly he is happy. Last Friday he was at Grandma’s house and was reading a book and suddenly he knows all the animal sounds and said Duck! I have heard “woo woo” for a dog before and I think I remember hearing “moo” way back when, but this was far beyond and it was just really impressive. It just goes to show you he knows more than he lets on. I think that the new speech therapy is making a huge impact. I found out the next day that she’s been working on animal sounds since last week. I think I am going to try to continue that. I was thinking about flashcards or something for body parts and animals and maybe colors and shapes. I’ll have to think about it.

We are working on giving Thomas a little brother or sister. We’ve actually been trying since he was about 8 months old. I just started on Clomid this month since the doctor thinks I am not ovulating correctly. Hopefully this will do the trick. I’m getting a bunch of tests done this week to see how my hormone levels are and also to see if I have insulin resistance. I have a good chance of that with family history of diabetes and having gestational diabetes with my first pregnancy. The doc suspects that I have PCOS, so it will be interesting to see if that is the case. At least there is stuff that they can do about it. I am crossing my fingers that the Clomid will work and that this is our month. Scott and Amy just had their baby a week ago today. I still have not met little Hailey, but I can’t wait. She looks just like Scott in the pictures and she has these huge pinchable cheeks. I just can’t wait to meet her.

We are going on vacation in less than a month now. I’m really excited. I can’t wait to see everyone again. I also can’t wait to see the mountains and do some hiking. It will be interesting with Thomas, but it’ll be fun. There are a bunch of things for young kids to do in the area too, like pony rides and bumper boats and mini golf. We’ll find something that he’ll like I’m sure.

School Play Group :(

Thomas and daddy go to a play group for autistic toddlers/preschoolers once a week (only every other week during the summer). It’s offered through the school district and is part of his IEP required therapy. I’ve never been able to go to these sessions because I worked so far away, but since I transferred offices a couple weeks ago, I was able to go to my first one last night. It was like a huge slap in the face. They had a larger group than normal yesterday so maybe it was the fact that there was more going on around him. I have always thought that Thomas was on the mild side of the autism spectrum. But comparing him to the other kids yesterday, I don’t think he can be considered mild anymore. He’s made a lot of progress in the last six months. His therapists and the daycare teachers have all been making a point of telling me that, but he isn’t in the same league as the other kids. They followed directions (with a lot of prompting and modeling) and enjoyed the activities. I still don’t feel like Thomas even hears the directions being given, much less understand directions. Modeling is doesn’t really work because he doesn’t stay still long enough to see what you are doing. Every time I tried to get him to join the activities he started crying. And not just a fussing cry, an all out “I’m sad” cry with tears streaming down his cheeks. Maybe he was just having an off day. I just want him to succeed. But he’s so far behind the other kids. And yes, I know you are not supposed to compare to other children, lets get serious, we all do it. I guess I have known that he is behind other kids. I don’t know why, but I felt better that he was doing better than a lot of the other kids on the spectrum. That sounds horrible. I’m just scared for him. I just want him to be happy. I want him to have all the opportunities he can have in life. And maybe I’m not pushing him hard enough. Maybe I need to get more therapy going. I only have him on the waiting list at one place. Maybe I should still be looking at more places. I’m not as patient as I should be. I take the easy way a lot and give in to what he wants. When he doesn’t eat what I make him, I’m afraid of him going hungry so I give in and give him something I know he will like. I probably shouldn’t do that.

I just thought he was doing so well and last night I just literally felt like I had been slapped. I don’t know how best to coach him to do what the group is doing. Every time I tried, I made things worse. But I can’t just let him do his own thing and let him play on the side by himself while the other kids are participating in an activity. I just feel helpless right now. I just need to regroup I guess.

He doesn't have a lot of the sensory issues that the other kids seem to have and in small groups he is like a different kid. I hope it was just a bad day. I hate autism.

Independence Day Bug Bites

I fogot to mention this before. Thomas got a really bad bug bite on his cheek on the 4th. I didn't really notice it till the next day. It looked like a blister the size of a pencil eraser. It wasn't really a problem till later that night when Thomas was scratching at it and broke the blister. He kind of scared me Sunday morning. The right side of his face was so swollen! His eye was almost swollen shut and his face almost looked a bit purple and you could really see the veins going out from the bug bite. I brought him to the doctor and she said it was not really a big deal but gave him a prescription antibiotic ointment to put on it. The swelling lasted through Monday, but it's pretty much gone now. The bug bite is now starting to heal so it looks much better and it seems to be bothering him a lot less too. Poor kid. He's always reacted really stongly to bug bites. I hope this is something he outgrows.

Fourth of July

We had a fun 4th of July. We went to a family-oriented picnic for several hours in the afternoon. It was a lot of fun! Our cousin Joy is in a band and they played for a while. I knew that she was in this band, but I guess I always assumed it was a rock band or something, but it is more like a dixie band. It was fun. They had all kinds of things going on. There were volleyball tournaments, horseshoe tournaments, pony-rides, contests for the kids, and more. Thomas kept wanting to run. So I would let him go and then follow him around. There was a lot of room to run, but I had to keep watching to make sure he was staying out of the way of the different games. When we got to the horseshoes, he had such a good time. It was so funny. I don't know what it was about the horseshoes, but he was clapping each time and screamed/laughed for the good ones. The people around us kept laughing because he was having such a wonderful time. We didn't do the pony rides, because he is still too small I think. I would love to go back next year so he could do that. They were even free pony rides. Sam wanted to go too, but the horses were a bit too small for him.

Fireworks later were really nice. We arrived way to early so we were all getting super ansy by the time they got started. We sat along a nice paved trail by the river. Tons of people showed up. Lots of kids running around. I wish some of those parents would not have let their little ones go right down to the river. It was kind of steep embankment and several parents let their 3-4 yo's go right down to the river. That made Thomas really want to go too, but it seemed dangerous IMO. Maybe I'm just an over protective mom.

In other news, Thomas is now saying/signing "me". And he's sometimes spontaneously waving goodbye again. One day maybe a week ago he started that again. It's nice to see. We are also getting ready for our vacation to CO. I'm super excited since I have not been there since my last year in high school. My grandparents and all my relatives on my mom's side have not even met Thomas so I'm glad they will be able to meet him. We're also going to spend a couple days in the mountains. I can't wait to do some hiking. I'm not sure how that will work with Thomas, but we've got the backpack carrier. I need to make some extra padding for the shoulders. I'm sure it will work just fine. We aren't planning on taking any of the difficult trails. I'm just really excited. This is also Sam and my first vacation together. We never even went on a honeymoon since I got pregnant with Thomas right away. We were going to go to Italy six months after the wedding. Now we are tentatively planning on Italy for our 5 year anniversary.

Anyway, we're doing well I think. I am worried about Thomas's road safety. He doesn't look before running into the road and he's intent on "escaping" and running down the street. I don't know what to do to teach that since he is only 2 1/2 and he doesn't understand a lot. I think I'll try to find a video maybe. I'm sure that Sesame Street has one.

More words and signs!!!!!!!

Thomas is doing so well right now. I’m just so excited! Everyone has been making a point of telling me how attentive he is and how he follows directions now and makes better eye contact and so on. It’s just amazing. About two weeks ago, he started being so much more precise when he signs “more” and he’s saying it too (“mo”). And a three days ago he started signing “all done” and he says “all-n” which he hasn’t done in a long time. The same day he started signing “eat” and “please”. He needed a tiny physical prompt to sign “more please”. That’s two words. And he said “eat” as perfectly clear as you can get. Even with the T at the end. I kept trying to get it on tape, but of course he wouldn’t do it for the camera when I was recording or he would as I hit the off button instead of the start button. But it’s huge progress just in the past week.

And he’s continuing progress with body parts. Until last week, I didn’t think he knew any. I’d try off and on to go over his body parts but never felt like he got any of it. This morning he was looking at the picture of Elmo on his chair and pointed at the eyes and said “eye”. He pointed at the other eye and said “eye”. Then he pointed at Elmo’s nose and said “nose” (not completely clear, but after repeating it several times it got clearer), then he pointed at where Elmo’s ears would be if he had ears and said “ear”. Then he did the same thing on the other side. Then he pointed out the mouth as he said “ou”. He kept watching my lips as I said “mouth”. And he kept trying to say it. Then a couple minutes later he was sitting on my lap and I asked him to point to his eyes. He proceded to point out his eyes, ears, nose, mouth (“ow”) and even head. I was soooooo proud! You can tell he really has to think about the sounds he is making and you can see how proud he is of himself. It’s just exciting. And he’s just started this in the past week.

I have to admit I am a bit scared that he’s going to stop using his new words and signs. It’s happened so many times before where he starts using a new word and uses it for a week or two and then stops using it. But I am feeling so hopeful right now.

"Eye"

Well, now I am up to date with the journal entries.

Here are a couple pictures. He has a bit of a black eye in the family pic. He fell off the couch a couple days ago and fell onto an empty coffee mug. Doesn't seem to be bothering him any though.

This morning the private speech therapist came over and we talked a bit and she did some things with him. She's really great with him. A lot of therapists, from what I have found so far, are a bit more reserved when in a new situation, especially with parents. She just drove right in, and when he was fussing, it didn't phase her. I really liked how down to earth and down to business she was. Thomas really liked the Connect Four game she brought with. I think that is something we are going to have to try. I also decided (before now I was planning on it, but especially after our discussion today) that I am going to get rid of a ton of toys. We have too much and such a little space for it all. We are really not very organized people to begin with. He has so many toys he doesn't know what to do with them all. When I was telling her about him dropping all his books off the bookshelves, one at a time, she suggested getting a small chair and table for him and get together three toys for him to play with that have a beginning and end. She said new things should be to the left and move to the right as he finishes (L-R like we read, etc). She said a lot of kids will find it helps them regulate themselves. I've been thinking about getting him a table and chairs anyway, so I will try to do that soon.

She was showing him a cool book where each page reveals a little bit more of the monster. He loved it. He even said "eye" by himself and pointed to it and everythign. She was working on getting him to say "nose" too. He imitated her mouth, but no vocalization with it. He did point it out when she asked where the nose was. And once or twice after she did it, he pointed at his own nose. Sometimes he needed a physical prompt to point to the nose, but he did alright. He seemed very proud that he was saying "eye". I'm going to keep working on that. He has never really been able to point to any body part and I think kids are supposed to have 2-3 body parts they know by 18 months. He's now 28 months old. Hopefully we can keep building from here.

He did great signing "more" during the session today and even this morning I noticed it. This is one thing he does very consistently. But up until now, most of the time, he put his knuckles together, not his fingertips. But now, he's doing it perfect. He even started putting an "m" sound with the sign. These are all good things to be seeing and hearing.

Other than that, I think it was a difficult session. Thomas was just having a rough morning. He kept fussing and throwing himself down. He actually had tears streaming down his face at one point. I think he may have just been having a rough morning. He was like that a bit before she got there too. He's having a nap right now so hopefully he'll be better when he wakes up. I was thinking about trying to go to the park this afternoon. If it doesn't rain that is.

I also found the PDF report from the school officer of the kid in Port St. Lucie who's class voted him out of class. It is despicable that the teacher did that. I understand that it was hard to deal with the behavioral things and that it is hard on the other kids. But rather than dealing with it like that, you can teach kids to be accepting of others. How about talking with the mother and the others in the IEP team to see if there is a better strategy to deal with the behavior. It says in the report that she would send him to the principles office for having his shoes on the wrong feet. Is that seriously something that kids get sent to the principles office for nowdays? He's in Kindergarten! I still can't believe that she would ask the kids to say those things with him standing in front of the class. How humiliating!

http://web.tcpalm.com/2008/05/29/Bartonrpt.pdf

Journal Entry from June 4, 2008

I think I have just about figured out the school situation. First of all, the school district evidently was letting too young of kids in the autism preschool so that is no longer an option. So after them pushing and pushing it, he can’t start until January at the earliest. I figured out what private school I want him in. They only do 3 days a week max at this age, but she thought he’d be able to get in there in August. So it will be three half days. She gave me a list of transportation companies too. I am trying to figure out how the parental fee works for TEFRA. If they go by last year’s tax return our parental fee would be $200 per month. If they go by our current income (which has gone up from last year) it would be $400 per month. I have found some papers that say they go off current income, and others that say they go off last year’s taxes. It’s a huge difference. If we do end up with a $400 monthly fee, then I think we will just wait until our insurance runs out. We have a $300 deductible and then $20 co-pay (which would be 3x per week). I would like to keep the extra hour of speech as well, along with the EI speech. I think that would be a good mixture of services for him without being overwhelming to him. We should keep our monthly charges under $400/month so I think we will wait for TEFRA until our number of visits runs out. We are also going to keep M from the PLAY Project coming once per week over the summer, although it is now private pay, since the program is over for the year and the grant is up. I thought about starting TEFRA to cover that, but I think if we just use our insurance it will end up being cheaper. I think I have it figured out anyway. I feel much more at peace about it.

I think that I’ve decided that the OT is irritating. The first time she went 2-3 weeks ago now, she went slightly overlapping the time that the ST and DT were there, but was able to get in a separate session. Then last week, when she said see you next week, she did not go at the same time, she showed up in the afternoon instead of the morning (without telling anyone about the change in time, which was overlapping the appointment with the new speech therapist (the private speech therapist that I have added on). I was so irritated. Well, angry is more the word. The ST said it was just a little overlapping (which doesn’t make sense if the OT was there at the times she said, they would have been 45 minutes overlapping), and the OT helped with a couple things. I think the OT was…..inaccurate about the times she was there and the length of time she was there. I trust the new ST and the daycare said that she was there from those times and was very professional. Anyway, I think I am back to just irritated and am not expecting too much from OT in the future. I’ll just work on some of those things myself. I shouldn’t do that, because she’s getting paid to do it, and I am not a therapist. I don’t think I am a good therapist for my son. I can do the “therapy though play” but I am not a therapist. Some parents can do that, but I don’t think I am one of them.

We’ve made a bit of progress in the last couple weeks. First, we’ve put the milk back in Thomas’s diet and all is well. It makes cooking so much easier. Melted cheese makes a lot of food more appetizing which is extremely important since he’s gotten so picky lately. It’s been 1 ½ weeks now with no side effects from the milk, so I think we are safe there. I am more convinced that the gluten is an issue. I decided to try it myself and I just went a couple days with no gluten. Today, I’ve eaten gluten all day and I feel like crap. I think that our entire family needs to eat better. I enjoy cooking so I’ll be trying to cook more from scratch and use less with preservatives in it. I also cooked some gluten (and casein) free lemon cookies that are phenomenal. You wouldn’t know they were gluten free. I used the flour mixture from glutenfreemom.com. It is an awesome flour mix that has a great consistency. I also tried a recipe for GF granola bars and they are awesome. Unfortunately, when I was looking at the ingredients of rice crispies, I missed the “malt flavoring” which has gluten, so they technically not GF. It seems to be a very little amount, since Thomas has not had any problems with them, but next time I will be more careful.

Anyway, the other good thing to report happened on Saturday. We were watching a movie as a family and I said “Thomas, look at the doggie” and he said “woof woof”. It was more like “woo, woo” but it was really cool. Then a minute later, I said, “Thomas, what does the doggie say” and he said “woof woof”. It was so cute. He knew what I meant and he knew the answer. He looked so pleased with himself too. We, of course, were clapping and congratulating him. It was awesome. When I was talking to M from the PLAY Project the other day, I was telling her about him giving me kisses. He concentrates so hard, and you can see him working out in his head how he is supposed to move his face before he kisses me. She said that it shows he has motor planning issues, which makes sense. It just takes a little longer for him to figure out how to make his body do what he wants. It was the same thing with saying “woof woof”. His lips were puckered for several seconds before he added the sound. You could tell he was really concentrating on that. It’s good to know because his therapists can work on that with him. Over the past month or so he’s been imitating our faces when we make different sounds or say different words, but he hasn’t really added the sound, and that is probably why. He’s concentrating so hard on how to make his face and mouth the right way that he doesn’t get to the part where you make the sound.

We went swimming last night and it was a lot of fun. He’s really getting good. He was jumping from the sides into the pool and was doing really well. He likes going under so we would just let him stay under for a couple seconds and he would start paddling and kicking just like he should. He was really doing such a good job. I was so proud. And when he has hold of the edge, he can get himself out of the water too, which was a bit of an issue as he ran off a couple times while we were stuck in the water, but I’m still very proud. I’m going to try to remember to bring the camera next time so I can get a couple pictures and a short video.

I also am going to be changing offices for work. I was thinking about asking if I could transfer, and then suddenly my supervisor asks if I want to work on a new project over there. We’re not sure if it will be perminant at this point, but that’s cool. I will miss the people I work with in this location, but I think it will be a good move. It will cut out at least an hour of my daily commute (not to mention save a whole bunch on gas), and I will be closer to be able to occasionally sit in on a therapy session or something like that. I’m excited.

Journal Entry from May 27, 2008

This weekend I came across an article about a 5 year old boy in the process of being diagnosed with Asperger Syndrome. Basically the teacher was sick of behavioral issues with the boy, so she had him stand in the center of the class and had all the other children tell him what they did not like about him. Then they voted him out of the class. She sent him to the nurse’s office for the rest of the day. This is a kindergarten class. And she was involved with his IEP meetings and knew that he was being evaluated. She still has her job and the police department determined that no mental abuse took place. How can that possibly be????? You just don’t do that to a child! Any child! AS gives him social challenges and how is this going to help??? It’s not! His mother has said that he has not gone back to school and won’t be this year. And when he goes with to bring his sibling to school he cries. How can a grown woman teaching kindergarten do this to a 5 year old child? And what about the other kids in the class. What is it teaching them? Maybe someday they will have some challenges themselves and they will think back to that day in Kindergarten and think that they are worthless or someone to make fun of. The whole thing just makes me so angry that I can’t even express it. Well today it does. Yesterday, when I first saw the article, I just felt defeated. I thought of it all day and I just felt defeated. I can’t think of a better word to describe it. Is this the world my child is going to grow up in? My biggest issue with Thomas’s diagnosis is how he is going to feel growing up. Is he going to feel rejected? Is he going to feel like he doesn’t fit in or have a place in this world? Is he going to grow up embarrassed or feel like an outcast? I never felt like I fit in growing up. I never quite found my place in school and I don’t want that for my child. Regardless of his dx. But this kind of a story makes me fear for my son. Because there are people out there like that. Teachers even.

Not to mention that it is so illegal. That teacher knew they were working on an IEP and that he was in the process of being diagnosed. How can you do that to a child with a disability that you know makes him socially awkward. A child that you know has trouble navigating his world. How dare you! And as a child with a disability, he has a legal right to accommodations for his right to an education. And how did the police determine that no emotional abuse take place? How can you possibly say that wasn’t abuse regardless of his dx. That is abuse for any 5 yo. Or any adult. How would any adult like to be surrounded by their peers while they told you what they didn’t like about you? That is abuse. Period.

http://www.tcpalm.com/news/2008/may/...t-classmate-5/

Journal Entry from May 21, 2008

I am still trying to figure out the school situation. I just don’t know what to do. The ones through the school district are nice and seem to be pretty good. I also have been looking at private schools. They are covered by insurance. We’d have to apply for medical assistance (TEFRA) so we would have a parental fee. But they would cover 100% of the charges and I also found out that TEFRA would cover Thomas’s portion of our health insurance. Once he starts a ½ day program we’ll also probably be able to cut the daycare cost by quite a bit. The more I think about it, I think we’ll just end up being even. I also found out yesterday that there are several transportation services that will bring him to and from the program. As long as it is considered a medical appointment, they will do to or from or both. And it’s covered by insurance. I feel a little nervous about him being so young riding by himself, but the person I talked to said that a lot of families use these services and I’d probably be able to ask for some recommendations. Before I found out about this I was wondering how people do it. Are SAHM’s the only ones that can get adequate services for their children? But this will make it doable. I tried to figure out if I could stay at home, maybe even take a 6 month leave of absence, but we can’t afford it financially and I’ve tried that just short term and I just go stir crazy. I’ve been trying to do therapy on my own, and I do OK with the Greenspan floortime model because I just play with Thomas more effectively to emphasis interaction and speech, but the others I am just not good at. He just frustrated, I get frustrated and we never seem to quite accomplish anything. Maybe as we both figure out what we are doing it would go better, but I just don’t think that I can be a good therapist for my son. We’ve done really well with the floortime, but that might just be because it is play, or maybe it is because M comes every week and helps us play with him better. I wasn’t so sure about the PLAY Project at first because “I play with him just fine without someone telling me what to do”. But both Sam and I have agreed that we’ve come a long way since Feb. I have also learned a lot by just watching M play with Thomas. She’s so good with him and while it’s all well and good to get advice, I learn better by observing. It’s made a huge difference for me.

Anyway, yesterday I went for a tour of an autism day program center. Their autism day program is either T/Th or M/W/F for three hours. It is one-on-one. They had a lot of classrooms but just one classroom for the younger kids. They have an indoor and outdoor gym. They have speech and OT there on site, but that would be separate. It seemed really nice. One thing that put me off about another school I saw was that it smelled, but this one did not. I think it would be a great place for him. I am also looking into some ABA programs. The one that came recommended I have filled out the application but I still have not heard back from them as to how long the waiting list is. I don’t want to send out all kinds of applications if he’s not going to even be called for a year. Or if they are all a year (which is seeming more likely), I can at least know what approach I can take to this. Maybe start him in one program but switch to another a year from now when we can get in. The day program I saw yesterday has a year waiting list, but she said that August is the biggest time of turn over and she said that, no guarantees, but she expects to be able to go through the entire waiting list in August. Lots of people enter other programs or do other things, or move, etc, so she said that she generally goes through the waiting list pretty quickly at times.

I think I am kind of leaning toward that program, but I just don’t know. ABA is really the approach that has the most research behind it so maybe that is what I should do. Again, I don’t know what kind of waiting list we are looking at for that. But is Thomas is really as mild as the doctor seemed to think, maybe, the trials of ABA are a little overboard for what he needs. But, honestly, I am starting to see that his autism is more severe than I originally thought. I don’t know if anything has changed or if it’s just becoming more obvious as he and his peers get older. Probably both. Maybe I just accepted the diagnosis better thinking that he was more on the mild side. Or maybe I am just feeling a little pessimistic and overwhelmed right now (which I am) and that makes me think that he is doing worse than he actually is. Or maybe we/I am just not seeing the amount of progress I was expecting and hoping for. I don’t know. I just wish someone would tell me the right thing to do. I just feel like I am looking time. They always stress how intensive, early therapy is so important and that it will effect how they are able to do as they get older. I feel like if I don’t do intensive enough now, that it will affect the rest of his life, which it probably will. Like I said, I would just like someone to tell me what to do.

I finally called the OT the end of last week. Thomas is supposed to get 1 hour of OT per month, which is a tiny amount of therapy as it is, but she’s only met with him once. Talking to her on the phone she basically gave me the impression that she doesn’t think that he needs it, that his social skills are a huge problem. She also said that she’s been seeing him weekly at playgroup. But it’s not like she is there the whole time and she doesn’t pull him aside and work directly with him. I finally said that I thought it was agreed in the IEP meeting and paperwork that he is to receive and hour of OT per month. She finally started apologizing and said that he’s going to meet with him twice this month to make up for it. So that’s fine I guess. Kind of irritates me. If he’s doing just fine, how about starting on some self-help things, like dressing himself in anticipation for potty training? But at least now I know that he’ll be getting it. Although again, this is one of those times that I wish I was a SAHM so I could oversee it better so I know for sure that he’s getting what he is entitled to and needs. Anyway, when I picked Thomas up from daycare yesterday she said that the OT showed up yesterday without calling to tell them that she was coming, and since it was a bad time of the day, she’s just going to go tomorrow when the other two therapists are there. I had enough of a problem with the idea of doing two therapies at once (which is something that was not clear at the IEP meeting but I now understand can be helpful), but three therapists at once? Are you kidding me? How do you expect to get that to work? What will end up happening is one or two of them will be working with them, and the other will probably end up helping the teachers with the other kids. That does happen occasionally with the two therapists. I can understand that there are times it is better with just one (for just a little bit of the session), and I have made peace with that. But three at once? Come on… I will wait to see what their notes say today when I pick him up, but I’ll most likely be giving the OT a call to make sure that it is separate from now on and that she calls and makes an appointment. That is not too much to ask. At least I am learning what questions I will need to ask at future IEP meetings.

Because of all these questions I am also trying to figure out what to do with work. I mentioned above that I tried to see about becoming a SAHM but it probably would not work out well, or at least work without adding a whole new set of stresses. I have also been thinking about cutting my hours, temporarily which my Dr said she would write a medical note for, or transferring to the other location. I have been keeping track of how much time I spend in the car. I average 2-2 ½ hours per day in the car. Yesterday, for example, I spent 2 hr 50 min driving and drove a total of 65 miles. That is a lot of time and gas money. If I transferred to the other office, it would cut a minimum of an hour off my daily commute. That’s a huge difference. Plus, if I wanted to sit in on a therapy session, I could go to that during my lunch break without having an hour + commute there and back to work. I have liked working where I am, but we also got the funding for our new lab cut, so the wonderful, once-in-a-lifetime opportunity I had with that new lab is gone. I still have job security over there and should have plenty to do, I don’t have that huge, can’t miss out on it, thing keeping me there. But I like the people and I have my nitch. But lastly most of what I do is on the computer so I could probably transfer that easily. Or maybe I could just arrange to switch locations for 6 months or something. I don’t know.

Well, that’s a whole big long-winded list of what-if’s. Again, I just wish someone would tell me what the best thing to do is…

Journal Entry from May 9, 2008

Things have been a little stressful lately. I keep getting sick over and over and Thomas had pinkeye earlier this week. I have been feeling a little pessimistic lately. I’m not sure why. I just feel like I need to reorganize everything and start over. I’m looking into a private school that has a autism day program. We’re going to apply for TEFRA and even though it will be an expensive co-pay, I think this is going to consolidate and increase all his therapy. I’ve heard nothing but good things from this school so hopefully we like it. Evidently it would be $100,000 per year if you were to privately pay for it, which is outrageous. But we’ll apply for the TEFRA MA and between our insurance and TEFRA they’ll pay for it. We’ll have $100-150 monthly copay, but it’s so worth it. He definitely needs more than he is currently getting, so I am really anxious to see how this works out.

I’ve also been having a great internal debate about my job. I love my job for the most part. But I feel like I need to be spending more time with my son and my family. I just can’t juggle everything that I have to do. I have been struggling with all of it for so long and I am just exhausted. Plus, I’ve been working so hard on getting procedures written and validations ready for our new lab and the funding was not approved. I feel like I don’t really have much of a purpose right now. I wonder if I should move to the other location, which is a whole lot closer to home and would probably cut an hour off my daily commute. The opportunity I had with the new lab was a chance of a lifetime. A chance to prove myself and give myself leverage to move up. But now that’s gone. If I move to the other location, I love the people over there, but I’d be the new one, and the low one on the totem pole. I just don’t see a way to really move up there. Maybe I just need to find my nitch. I also thought about going part time, but they generally don’t do that and if they did it would probably just be a short-term kind of thing. It would also probably affect my benefits. I just don’t know what to do. I was really excited about the opportunity that fell in my lap and now I’ve lost that and I feel lost. But if I were to be a SAHM we wouldn’t have enough income to cover the bills and I’ll have a very difficult time getting back into the workforce. I had a hard enough time getting back into Microbiology as it was. If we get Thomas in one of these programs it will probably make me feel better. But I still feel like I should be going to some of the therapy sessions and some of the playgroups and things and overall just participating more. I just feel like I am failing.

Thomas has been doing pretty well. I wish we could just keep building on his improvements. It seems like he has a breakthrough here and there, but it’s not something that he continues to do. I hope that it changes, but his only regular words continue to be mama and dada. Yesterday was pretty good though. He said baba when he wanted his drink and later he was signing more and said more too. I am trying to work on the opposites with him, open and close, in and out, over and under, etc. He is using “more” like “I want”. But I guess that’s OK. He also was imitating me and H when we were making animal sounds. We mooed and woofed and he imitated our mouths. He didn’t actually make any noises, but the imitation is a very good thing. He’s actually been doing that more, imitating the mouth motions of words or sounds we make. Not consistent really, but more often than before.

I bought “Baby Babble” which is kind of like baby Einstein but with extra emphasis on the speech aspect. Thomas loves it. And when I say he loves it, that’s an understatement. There are some parts that he laughs at so hard that he practically falls over. It’s hilarious to watch him. Anyway, the video was put together by the founders of Thomas’s new speech therapist company. And I just got the call for his first speech appt. She’ll be doing it at the daycare. Next Wednesday will be the first appointment. She’ll be trying to fit in one session each week and starting in June they’ll get a regular time set up.

Wednesday when I picked Thomas up from daycare I let go of his hand while I was putting things into car. Sometimes he runs, and I follow, but sometimes he just waits to get into the car. Wednesday he ran and as I went to follow him I saw it was too late. He was stopped at the edge of this huge mud puddle. They were doing landscaping, so they had dug out this 5x5ft area, which had filled with rain. It was the nice black mud too. As I called his name, I saw him, as though in slow motion, fall face first into the puddle. He got right back up and was covered head to toe in dark black mud. He just looked down like, “what happened?”. I was laughing so hard I was almost crying and one of the aids from one of the other rooms at the daycare saw it happen too and she was laughing too. It was seriously one of the funniest things I have seen. I'm glad he wasn't upset about it, just stunned. So I brought him inside and had to change him in the bathroom. And of course he had already gone through his extra set of clothes that morning, so we borrowed extra clothes and went shoeless. Good times….

Journal Entry from April 30, 2008

Thomas has really started having more tantrums the past couple weeks. They are not terrible really, but he will just be inconsolable for a while. This has kind of coincided with his obsession of the gate on the porch. He opens and closes it, and opens it and closes it, and opens it and closes it…… He’ll just keep doing it until we pick him up and carry him into the house crying with tears steaming down his face. Last night when I kept trying to redirect him to go into the house, he took me by the hand and walked with me into the house, and then he went back inside and closed the door behind him. I then went back outside to get him, and he was running down the driveway toward the street. It really scared me. Usually he’ll just go back out and play with the gate some more. We live in the middle of the city so it is incredibly dangerous for him to be running from me. Now that it is finally getting nice we’ll start going to the park again. I’ll try to have him walk with me so we both are more comfortable with walking on city streets.

We talked to M (from Play Project) last night about the gate-shutting thing and we think that it is a cause and effect thing he is going for. And he’s made it part of the evening routine (we don’t have the problem in the morning, he might do it once or twice, then gets right into the car to go). We’re going to try to get a really fun, cause and effect toy to get him away from the gate. We’ll make that part of the routine. We’re also have a big problem with the routine thing at daycare. He’s getting more and more set on his routine. We were able to break him of the routine of opening his bedroom door after we put him down for bed. He would sneak back to the door and open it and peek out over and over and over… So we got a doorknob cover so he couldn’t open the door. It was on there about a month and I took it off over the weekend. He did really well and hasn’t done it since. It’s nice that it worked so well. Hopefully we’ll keep doing well with that.

Every other week Thomas goes to the autism playgroup with daddy one morning (the other week it is an afternoon playgroup). For various reasons they have not made most of the morning playgroups, due various people’s illness, spring break, lack of transportation, etc. Yesterday was the first time that they went to the morning playgroup and then brought Thomas back to daycare for the afternoon. First of all, there is theoretically enough time to get there in time for lunch, but yesterday they will just finishing lunch and laying down for naps. Then, (we’ve actually been having this problem in the mornings too) we usually start out in different room and he plays for 5-10 minutes before the teacher in his class arrives. He is absolutely set on starting in that other classroom, including yesterday. He was already upset when we wouldn’t let him in there, and then we brought him into the classroom and they are finishing lunch and we try to get him to sit down and eat and that isn’t working. He ended up just screaming. We got a call an hour later wondering if something had happened that morning (like shots or something) because he was still really upset and wouldn’t settle down. I also wonder if it was because I was there. Normally I wouldn’t be there, but I was meeting Sam for an appointment we had yesterday. I don’t know what to do. Should we skip the Tusday playgroup because it interferes with lunch? Or should he have lunch before leaving the playgroup (just bring something with)? Or should we see if he can sit in the daycare office and have lunch on that day and then have him go down for a nap?

M also suggested that when we bring him late, we should have him sit in another room for a couple minutes with one of his favorite toys so that he gets to have a little of that free play that he usually starts the day with. I just don’t know what to do. I think that the playgroup is beneficial because he gets 1:1 attention interacting. Most of the other kids are autistic too so it is very structured and they teach the basic social skills that our kids are lacking. I just don’t want it to be such a distraction that it ruins the rest of his day. At the beginning when Sam was still working nights, they had made the suggestion that if we weren’t able to do the play groups maybe the DT and ST could stay for an extra hour on his regular therapy day. Maybe they should continue with the Thursday group and every other week do an extra hour of therapy. I don’t know. It’s hard to know what is going to be most beneficial to him. M also went to observe and make suggestions at daycare. She said that there is basically no transition between activities. The teachers clean up and then the kids are just expected to do the new activity. She tried to explain that Thomas is very focused on what he is doing and does not notice that they are cleaning up so it comes as a shock that he suddenly has to stop the thing he was enjoying and do something new. She suggested flashing the lights or singing a clean up song or something. They have been using the pictures, but we’re still not completely sure he knows what they mean. We need to figure out something to communicate the change to him. It makes it so much more work and stressful to have meltdowns every time they change activities.

I think I am going to buy a set of pecs pictures. I have been trying to do my own, but they are not as nice and take too much time. I would like to start using the visual schedule. I just want a nice set to use so that it is easy and complete and everything. I put in a bid on ebay for a CD with pics, so hopefully I will get that. Well that’s about it.

Journal Entry from April 25, 2008

I have been thinking that Thomas is really doing well but it is hard to tell sometimes. My BIL stopped by last weekend when Thomas and I were eating lunch. He talked to him and played with him just a couple minutes while he was in the highchair. Thomas was laughing at him (my BIL is very animated). When I talked to my mom she said he’d mentioned it when he last talked to her and he said he was impressed with how well Thomas was doing. It is good to hear that. Especially from him because he is very opinionated and says what he thinks (not always a good thing, but at least he is honest).

I got the name of the GI doc that specialized in autistic GI problems. We have to wait three months, but he’s supposed to be really good and if he specialized in autistic kids, that is definitely worth waiting for. When we went to the doctor on Sunday we got a note that it is a chronic condition and that it is non-infectious and that he can stay at daycare unless he has other symptoms of illness. Hopefully that will be the end of being sent home from daycare.

This morning when I dropped of Thomas he went immediately when for the dolls and picked one up, put the “baby” in the stroller and started pushing him/her around. It was really cute. He does really well with his imaginative play.

Last night I noticed he was walking around on his toes. I’d never noticed that before, but is common with autism. I mentioned it to Sam and he said that he’s noticed Thomas doing that in the last couple weeks. When we were suspecting autism and all during the time we were in the process of getting the diagnosis I watched him walk to see if he did that but I never saw him do it. Interesting to see new things like that.

They had mentioned during his evaluations that the “W sit” (with his legs out to each side) is an indication of autism and low muscle tone. However, I never heard that we should do anything about it. M from the Play Project said that it can hurt how his muscles develop and hurt is posture long term. I never knew that. So we are trying to correct his sitting position when we catch him sitting that way.

I just ordered the Baby Babble video. It is supposed to be a pretty good video for kids with speech delay. It helps them imitate the mouth and the sounds of the words. It was made by the two founders of the speech therapy company that we will be starting with in a couple weeks. It got pretty good reviews. It sounds a little bit like Baby Einstein but lower budget and a focus on speech therapy techniques. Several of the reviews I read said that it was like having a speech therapy session at home on a DVD. And it has a parent instruction section. It is a bit pricy at $18 but I figure one session with the speech therapist is $20, so it’s like having a therapy session that you can do over and over for the same price. We’ll try it out and if we don’t like it we can always give it away.

I got the toileting visual schedule from his therapists. I think that I am going to start getting ready for this. I would like to start in a week or two. Maybe I will start by getting him to pull his pant down and pull them back up when we change his diaper. He’s good about helping get his shirt on and his socks and shoes but he doesn’t really help get his pants on. I have “H” the college student coming tomorrow so maybe we could try it then. H has done a lot of research on ABA so we’re going to try some of it with him. We both agreed that we didn’t like the idea of a two year old sitting at a table doing “trials”. But there is a lot of research behind it and so many people swear by it. I am hoping to get a good back and forth going over a couple weeks/months and then, once Thomas gets the principles and knows what is expected of him, we’ll take it into a more natural situation. We’ll give it a good go and see what happens. It can’t hurt and it might help. I’m really excited to try and H is really excited to try. She seems super nice and eager to help so I think this is a very good match. I really couldn’t ask for more.

Journal Entry from April 18, 2008

On Tuesday night, Thomas somehow found an oreo or a piece of one. Wednesday he never had a BM but was super gassy and smelly. Then yesterday morning, I got a call from daycare to say I had to pick him up because he had diarrhea. My night he was just about back to normal. It’s been a while since he’s had diarrhea. I think it’s only happened once in the past two months since he’s been on the diet. But of course the daycare’s policy is two diarrhea diapers and he is sent home, can’t come back for 24 hours and have to have a doctor’s note. This really sucks because he’s not actually sick. He never has a fever or any vomiting along with it. He eats just fine. And I’ve told them that a lot of autistic kids have GO problems. We got a name of a GI doc from our developmental ped. He specialized in autistic kids and the related GI issues. I figured that we would wait and see because Thomas has been doing so much better. But I think I will make an appt. It would be good to at least hear from a professional if we are on the right track or if there is anything else that we can do or have tested. It’s frustrating though. Sam was sick himself yesterday and he stayed home today. I really hope it doesn’t get him in trouble at work. They’re really picky about calling in sick. I called around and couldn’t find anyone to watch him today. It just sucks because we pay so much for daycare and it’s not like he is actually sick or anything, but we have to miss work and pay for a doctor…. Grrrr. But I appreciate their approach to keeping the other kids well. I just need to get a good doctor’s note. The last time I got a note, but did not keep a copy myself and they don’t have it anymore. Oh well. I’ll get another one and keep a copy and we’ll go see the specialist. We’ll get it figured out. I was kind of hoping that the diet was not working because it is a pain in the @ss to do all his meals for daycare, and it’s hard to do meals on the go. But it does seem to be working. It’s been two months so far. They say to give it three months and then one day give a couple crackers and see how he reacts. And then a week or two later, give him some cheese or a glass of milk and see how he reacts. I figure I’ll still do that in another month or so.

I was kind of proud of myself for making ravioli. They actually turned out OK. Thomas really likes them and the pasta is gluten free and actually tastes better than the ones we buy. I did not get it rolled out thin enough, so they were a bit doughy, but I will do them again. I used a recipe found on a celiac website for the pasta and a allrecipes.com recipe for the filling (squash). Next time I am going to try a mushroom recipe I found. It calls for cream cheese, and I found a tofu cream cheese (yuck). Hopefully mixed into the recipe it will be good. We also found a gluten-free bakery in S. Minneapolis (Madwoman Bakery). They are a bit expensive as all gluten-free things are. We tried a individual sized pizza that was really good. They also have these tea cakes that, again, are really price but good. They are kind of like a muffin. You wouldn’t know by the taste that they are gluten free. Very tasty. I will be going back to try more.

Journal Entry from April 16, 2008

I met with a friend of a friend this past weekend. I’ll call her S. S has an 8yo girl with autism (we’ll call her H). It was really fun getting to know her a little bit more. It was really…reassuring that I’m not alone and that S has gone through the same things and that she, her daughter and her family is OK. Her daughter was super sweet. She has the social awkwardness and her speech is a bit awkward, but she is doing great. S kept saying over and over how much my story is like what they went through with H. They started getting a bit concerned about her speech at 14-15 months, worried about a hearing problem at 18 months and eventually got a diagnosis. It really isn’t that long ago (6 yrs) but she said it was a huge ordeal and a ton of testing to get the diagnosis. That makes me feel a lot better about that part of our process. From start to finish it was only about 4-4 ½ months from the first appointment for hearing to the time we had the ADOS testing. She said it was about a year before they got a diagnosis.

It sounds like Thomas has a bit more speech than H had, but not much. And he doesn’t have some of the sensory issues that H, and a lot of kids have (although he seems to be a little under-ly responsive to some sensory things). S remarked several times about how easily he transitioned in a new environment. This is really one of his strengths but I could see it being a source of a potential weakness as he gets a little older. When he is in a new place, he is so excited and runs to explore, but he doesn’t really care if I am there. I hope that it is just because he is only 2yo, but he is a bit of a “runner”. He is so curious and everything that he just goes to explore, but never really looks for reassurance from me or anything.

Overall it was just a really good time. They have a great family. They have 5 kids and they were all just wonderful. The two younger girls helped entertain Thomas for most of the time. They were really great with him. It was cute. The 4yo kept trying to give him toys and show him things and most of the time he would not notice or respond when she called his name, but she kept trying. When he didn’t respond to his name, she would bring the toy around in front of him until he noticed. It was really cute.

I asked S about potty training because that is something that we are looking at starting soon. I think I shouldn’t have asked because I am rather scared now. She said H wasn’t completely PT until she was 6. That is so scary to me. I think one of my biggest wishes for Thomas is to be self-sufficient. That’s just one of the things that is generally important to me. We talked to M with the Play Project last night about PTing. They go by Greenspan’s theories for bridging interaction through play. She said his book “Engaging Autism” says that a child with autism is not ready for potty training until they can answer “W” questions (who, what, when, where). Sam and I and M all agreed that we didn’t think that was true. There are some autistic people that remain non-verbal, but are still potty trained. I’m not sure we are completely ready for it, but I am looking forward to trying. We are not pushy people and we’re taking a pretty relaxed attitude toward PTing so I don’t think it will be an issue. I’m just not sure he will understand right now. I think I’d like to try to work more on PECS and the visual schedule and become consistent with that before we try. I have heard from most that the visual schedule is an integral part of the process. Since I don’t think he understands a lot of what we say, or at least I don’t know that he does, I think having a visual representation of the steps will be important in understanding the whole concept.

This Saturday I have a senior from Bethel University coming over to help out with a couple things. I need to figure out exactly what I want her to do. I had a lot of ideas but now that I am trying to plan something, my mind is blank. Grrrr….I’ll need to go through the materials from the autism society classes we went to and figure something out.

Also, on Thursday I was talking to the director of the daycare. I was telling her, again, how great all of the teachers have been and how hard and really devastating not only getting the diagnosis but then not being able to find anyone to care for him during the day. This daycare has been wonderful. And I have observed a couple times when they’ve been outside and not seen me and they really treat him like the other kids. That is important to me, especially holding him to the same behavior standards. When he took a toy from another child, she was there right away and took the toy back and explained that “we need to share and he was playing with that”. It is important that she explains what he is doing wrong and not just taking it back. He may not seem to understand, but I think he understands more than we would think. And even if he doesn’t understand it now, he eventually will and it is important to keep connecting the words with the actions. That’s important. Anyway, I was talking to the director about how well they are doing with Thomas and she said she was thinking that when he gets a bit more comfortable with his therapy, she’s going to try to get a couple unpaid interns from the college to work with him a couple more hours a week. It’s a great experience for the student, and it’s always good to get more people in there helping out and it would be great having a couple more people regularly reinforcing the therapy ideas. I think the school therapists and M with the Play Project would all be more than happy to work with the interns a bit to give some guidance. I couldn’t believe that she was already planning on bringing them in. Talk about pro-active. I was thinking that maybe down the road, paying for one of the autism society people that lead the skillshops to go to the daycare on one of their staff development days or monthly meeting or something, to give a little more education on how kids with autism learn differently and a variety of approaches to try. I’m really excited about all that Thomas has available to him right now. I think he’s going to do great.

Oh, I almost forgot, we are getting a private speech therapist for Thomas an hour a week at the daycare. They said that they wouldn’t be able to get him in until June, but I just got an email yesterday saying that they may be able to get in a couple days in May. That sounds great to me. On a side note, I think the vitamin supplements are helping Thomas’s health. Sam and I both got a terrible cold last week, but Thomas never got it. I was really excited about that. He’s had a minimum of 12 colds this winter and the number could easily be closer to 20. We’ve both missed so much work because of it and I’m glad that his immune system is finally getting stronger. That’s about it for right now. I’m feeling very positive and excited about all that’s going on.

Journal Entry from April 4, 2008

We went swimming last night at it was a blast. We didn’t go for long, just 30-45 minutes or so. Thomas just has so much fun. He always has a smile on his face. He never stops moving (in general) and he’s no different in the water. He often gets moving so fast that he falls over. But even as you are pulling him out from under the water he always has a great big smile on his face. He has absolutely no fear, which honestly, is a bit scary. He keeps going, even as the water gets deeper. We have to keep a constant eye on him, which of course we would do anyway, but he goes under so often we’re constantly pulling him back up. He is getting great pulling himself back up in the shallower water. I’m trying to let him go just a bit longer (an extra second or two) so that he gets to at least try it himself before I swoop in. He’s been improving so much when he goes under in the deeper water; he starts paddling and kicking and he looks like he knows exactly how to swim. It’s really cute. I’ve had pretty good luck walking next to him in the deeper water with him at my side and my arm around his waist so that he can practice his kicking and paddling. And he never looses that smile.

This morning when I dropped Thomas off at daycare, E asked if he’s always that happy at home because he almost always smiling and happy and excited about whatever he is doing. I told her almost always. They did some dancing the other day at school at several of the teachers mentioned how much he enjoyed it. That night he was dancing at home too and I see him dancing every now and then. It’s kind of a mix between dancing and jumping up and down which he is just starting to be able to do. He has a good time. And hopefully he’ll have better rhythm than his parents.

Journal Entry from April 2, 2008

April is Autism Awareness Month. Even being aware of it, I think I was in denial for a long time. My son is such a wonderful kid. He’s very smart, he’s funny, he loves to snuggle and he doesn’t have all the sensory issues that so many autistic children have. He’s getting farther behind socially. The social hasn’t been much of an issue, because 18-24 month olds aren’t very social. But as other kids are developing socially, he is not. But we’re getting therapy and he’s making progress. And they keep telling me at preschool that he is probably the happiest kid there. I just love his smile.

Thomas has had a couple really good weeks. He’s been doing great in therapy and there have been a couple random positives. We’ve started the GFCF diet (about 4-5 weeks ago now), the Omega-3 CLO (about 3 weeks ago) and the SupraNu Thera (last Thursday). I think it is making a big difference. I’m not completely sure of what is making the biggest difference to him, but I think he’s doing really well right now.

About two weeks ago, he woke up in the middle of the night, which is rather unusual for him. I was singing to him trying to get him to go back to sleep.

Me: “Twinkle, twinkle little star” (Big yawn…)
Thomas: “How I…”

And then he looked at me, like he was wondering why I didn’t finish. I’ve tried to get him to do it again, but he won’t do it. At least I know he can. Then a couple days later, when M from the PLAY Project was at our house, he was sharing a cookie with me and usually I say and sign “thank you” when he does that. Well, I was talking to M and didn’t say thank you that time. Thomas twice said “thank you” and then made me sign thank you and then he signed it himself. It was awesome. I thought it might have been my imagination, but I looked over at M and she looked shocked too and said it sounded like “thank you” to her too.

Last night we were having trouble getting Thomas to sleep. (We don’t have these problems often.) He said something like “pee, pst, pst” and then he went and sat down on Sam’s lap and started grabbing at his diaper. Maybe he is getting ready for the whole potty training thing. At daycare he sees all the other kids going potty, so maybe that is a motivation. We’re going to keep working on the sounds and words associated with diapering and potty-ing.

Over the last 3-4 days he has started also putting his arms up and saying “up”. He isn’t completely consistent with it, but he’s doing really well. When he doesn’t actually say “up” I generally wait for a couple seconds to give him more time. Then I say “up” really animatedly and then I pick him up. I try to remember to always say “down” when I put him down so he gets that part of it too. Sometimes it is hard to remember all this stuff. It doesn’t seem like much, but it really is a big step for him. And something that most parents don’t have to think about.

He doesn’t have any therapy this week because they are all on spring break. That kind of sucks although they probably wouldn’t have made it to playgroup anyways since Sam has this horrible cold that I’m finally getting over. I’ve talked to KidSpeak about getting more Speech therapy going. They’ll do 1 session a week at the daycare. It’s covered by insurance other than a $20 co-pay each week. They may not be able to start until June, but I’m hoping that it won’t be that long.

I’ve gotten so bad with housework. Both Sam and I have been sick so much lately and so busy lately that the housework just keeps piling up. I wish I could just get it nice and clean. I think I’d be better about doing therapy at home if it wasn’t such chaos around us all the time. We tried having Sam’s sister, Dawn, come over to clean. She did OK. She was only there for about an hour. But she got all the dishes done. Dawn is schizophrenic and she’s been feeling dizzy so she’s now walking with a walker. It’s just sad because she is only 37. She keeps saying that she want to move back into the nursing home. It’s just sad. If she didn’t go out and spend the night at flea bag motels for $60/night, or buy $50 of underwear that doesn’t fit, she would probably have money for food. Hopefully giving her something to do, and giving her a purpose will help some of the other issues. We’re pretty sure that the dizziness is just an act or at least very exaggerated. We’re going to pay her in food. I’m going to freeze hamburger patties and lasagna and things like that so she has food in the freezer. And it’s stuff that she won’t give away, and people won’t take from her. And healthy. That was the other thing that shocked me. I hadn’t seen her in about a month, maybe two. She looked like she had put on 50 pounds or more. She needs to get active. I think everyone needs a purpose. And that reminds me, I have some old jewelry making supplies from years ago that have just been sitting there. I was thinking about trying to get her to make some things and then setting up an Etsy or Hyenacart site. She could make a little money on the side and actually make things. No more sending in her last $20 that should be spent on food to scum that advertise work from home. The last one sent her a one page list of other places to send $20-30 for work from home kits. We keep trying to explain to her that they are all scams, but she just doesn’t believe us. “But I can make $500 per week”. Drives me crazy and makes me very thankful for the common sense I have been blessed with. I think I will try again to contact people about getting her into a group home. I have enough going on with my own family without taking care of her too. I figure I will talk to our social worker (signed us up for waiting lists for different funding grants) and see if she can get the ball rolling. There should be something for her out there. With a little help and guidance, she could be a contributing member of society, and a happier, healthier person.

Anyway…we joined a community center last week. It was only $60 per month for the family membership and we’ll take Thomas swimming 1-2 times a week. That will help his low muscle tone and balance. And it’s supposed to be good therapy in general. And he has a blast. He even climbed the steps to the small slide all by himself. He sits down and goes down the slide just like a big boy. He was so proud of himself…and I was proud of him too. I’d like him to become a bit more aware of the depth. The toddler area goes just above his head, but he just keeps going. He has gotten better getting himself back up if he falls as long as it’s not over his head. We’ll keep working on it. I’m not going to do official swim lessons, but I was thinking that I might try to spy on one of their toddler classes to pick up tips.

Journal Entry from March 13, 2008

Things have been kind of crazy lately. We're starting to get into a rythem (sp?) now. Sam was finally able to switch to days so that's been great. It's nice actually spending time with him. We took a class on the ABA(applied behavior analysis) therapy style we we've been trying that approach. We're really more of a laid back family though, so we're doing it our own way. We've started out just trying to introduce the PECS's pictures. I sit behind him and hand-over-hand help him to trade the picture for the object. It seems to be making a huge difference just in a couple days. The speech therapist yesterday seemed really impressed at how quickly he's caught on in the past week. It was actually a lot of work. And it's difficult to do with a two year old. He's always on the go, so being asked to sit a work is a big deal. We try just doing it for a couple minutes, let him run around, do it a couple more minutes...etc. His speech and signing and even the pictures has really been great in the past week or two. We also started the GFCF diet about a week ago. He just keeps getting the runs all the time, so I figured it's time to try this and see if it helps. We finally got all the blood work back and everything was negative. There were a couple vitamin levels that were on the low side, but nothing that really stood out. I wasn't really expecting there to be, but I wanted to know where we were starting before we start changing his diet and starting new vitamins. In a couple days we'll be starting the new Omega 3 supplement, since the other one just ran out. The new one has a ton of omega-3's so hopefully it will help. Then we have two more weeks before we run out of the multivitamin so we'll be starting the new vitamin with extra vitamin C, B6, ,B12 and magnesium. They are both rather expensive at $20 and $50 per bottle, but they should each last 6 months, so it's really not that bad.

I just started on a new anxiety med last week. I've been super irritable and nervous lately, so I decided that I needed to do something about it. It makes me feel a little bit out of it, but not too bad and I am getting used to it now. I hope that it just gets me out of this rut. I just need energy to do what I need to for my son. I never would have thought that it would be this emotionally draining to get this diagnosis. I guess that it's the same as they always say, it only happens to someone else...until it happens to you. And it's really not that bad. I just want my son to be happy and they keep telling me that he's the happiest kid at daycare. He always has a smile on his face. And he loves to snuggle. I love that...