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…
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.
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 an idiot. 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.
Last Saturday 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". 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.
He did great signing "more" during the session. 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. Saturday 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.
Thomas is doing so well the last couple weeks. 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.
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.
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.