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.