I've been thinking about starting a journal for a while now, but I decided that it's just time. We are in the process of getting an autism diagnosis for our son, Thomas. He just turned two the first of February. I'm having a much harder time with this that I ever would have thought.
Where to start.....He hit most of his early milestones on time. He crawled at the late end of normal. He walked at the late end of normal. At Thomas's 15 month appt, he had about 3-4 words that he said but it was pretty infrequent. He loved clapping, but he wasn't really waving. He could...he just did very rarely. He was very affectionate, the center of attention, and very social. He has always been a really happy smiley kid. At 15 months, the ped said that he was a bit behind with language, but just wait and see what happens until the next appt at 18 months.
At 18 months, he was at about 6 words. He stopped waving entirely. We were concerned about hearing, but knew he would come running when he heard Veggie Tales start, so we knew he was hearing somethings. I figured it was just me being overly concerned. His doc at the 18 month appointment was a different doctor and she said that he was just fine and seemed to be doing just fine. She just blew off my concerns about his hearing.
About 2 weeks later, he started at a new daycare for the first time (we'd always worked opposite schedules so we didn't have to have daycare). By the second day, the new daycare lady said she was concerned about his hearing and I knew that there was something wrong. And finally someone else thought there was something wrong too. We made an appointment for a hearing test which took about 5-6 weeks. The hearing test was normal.
I found out about early intervention which here is done through the school districts, so I made an appointment for a screening. It was about 2-3 weeks for that appointment. She agreed that he was very behind with both comprehension and expressive language. He was at about a 6 month level. He was a bit behind with both fine and gross motor as well, but a lot of that I think was because he didn't understand what she wanted him to do with the things she was giving him. I still wasn't too concerned, because he would get speech therapy and catch up, and it was all free (which was important since our crappy insurance didn't actually cover anything). And the screening was meant for 21-24 months in age, and it was a week before he actually turned 21 months. On her way out the door, she noted that he waved his arms when he was really excited, and asked if he did that a lot. He'd always done that, since 5-7 months or so. So I started asking around, and everyone always mentioned autism. But I knew that couldn't be it. I have a high functioning autistic brother, and they are nothing the same. And Thomas is so social and is always smiling and makes great eye contact (although he hadn't during the screening, but that, I was sure, was because he was excited about the new person and new toys to play with).
We ended up waiting 7 weeks for the speech assessment. The day before the appointment, Thomas pulled a little girl's hair and the daycare lady just freaked out about it. He wasn't trying to be mean. She said he was just laughing, and just didn't understand that he was hurting her. She then told me that she wasn't sure how much longer she would be able to care for him. By this time, I was finally getting past my denial, and knew that autism was probably something to look at. But she told me a lot of things that day that really would have been nice to hear a while back. She said that he almost never had good eye contact with her. Up to that point, I'd never really had that problem with him. We were nervous starting him in daycare because he'd never really been around a lot of other kids. We tried to have playdates, but he wasn't really used to that on a regular basis. And she had always told us that he was very gentle with the other kids and occationally she'd tell us how he'd had particular fun playing with another kid that day. I didn't find out until the day before the speech testing that yes, he was very gentle with the other kids, but that was mostly because he never played with the other kids. I think that would have been nice to know before then.
Anyway, the speech assessment was very good. They agreed that they saw a lot of red flags for autism. And we made an appointment for an autism specialist through the school to test him. In the meantime I was doing a lot of research and finding a lot of really positive things about early intervension and dietary intervension and supplements that would help and that a lot of kids by the time they get to school you wouldn't even know they were autistic. The autism screening really got me back to reality. He did a lot worse in the testing than we thought he would. And the when she was giving us the results, she was so negative. She wasn't even cautiously optimistic, she was more negative. She was nice about it, but I still cried the whole way home.
The following week on Friday we met for the IEP meeting. And to back up one day, Thursday evening when I picked Thomas up from daycare, she had a letter to let us know that she was dropping us. She wasn't going to give us a final date, but wanted to aim for 3 weeks. We were told that after the IEP meeting, therapy would start the next week, and they would do it at daycare, which she'd never said would be a problem, but when she gave us her notice, she said that she'd rather not have them come to her house. So anyway, the IEP meeting was OK. They didn't really sound like they were going to be intensive about it. But I figured I would wait and see what happened. They kept stressing that we can change the plan at any time. The following three weeks were incredibly stressful. I had been at my job for almost a year as a contract worker, but suddenly was hired on directly, plus things were getting really busy at work (and really haven't let up yet), we were researching therapy and diets and stuff, filing bankruptcy, and having to find daycare all at the same time. It was horrible looking for daycare. I kept finding ones that were just over the school district lines, and they won't go over the school lines for therapy. Or, the people weren't comfortable with caring for a child with autism, or they didn't have any openings. I found one that was comfortable and had lots of experience, but she mostly cared for severly disabled children. And that wouldn't be a very stimulating experience. We finally found one that has actually been pretty good. He's been there two weeks now. He's still adjusting, but he's doing OK.
About the time of the autism testing, he started really regressing overall. His eye contact is non-existant some days. Right now he is down to "mama" and an occational other word thrown in. And occassionally he'll sign "more". He's getting worse at interacting with other kids from what I have seen, but maybe I wasn't really seeing it in the first place. He's also started spinning in circles, or closing his eyes and shaking his head back and forth (stimming). It's harder to get his attention, harder to get him to respond, and he's suddenly become really picky about what he eats. He used to eat pretty much anything. And about a month ago, he started getting picky and at the new daycare hasn't eaten anything other than fruit, bread and the occasional afternoon snack.
We missed a couple therapy sessions due to illness, both ours and theirs. But we should be on track now. I'm very disappointed that they are just going to combine the developmental therapy and the speech, so he really just gets one hour a week. We will try to bring him to a play group for autistic toddlers to help give him a little nudge in the right direction interacting with others. We have to wait till DH, Sam, gets transfered to days. They said no more than one more week (and since it has already been amost 4 months since they told him he got the transfer, it is about time). There is also a research project going on right now, the "Play Project" that uses the floortime method and a couple other play based therapies. They will be doing that in our house once a week in the evening. We are also trying to change to the gluten/casein free diet. I figure we'll give it a couple weeks to see if it makes a difference. It helps some kids, and for those kids it is a huge difference. I am hopeful that it will help because of celiac disease running in my family and schizophrenia which runs in my DH's family which they've found related to gluten/casein intolerance.
I am feeling rather drained now. It has been a long couple months. It is going to be a lot of work for a long time coming, and I'm not sure I am ready. I remember when I first found out and I just cried that I just "wanted my kids to be normal". It sounds non-PC, but having a brother with autism, and knowing the "special ed" kids in school growing up, I know if will be a lot of work for him. And I know that things are different that when I was in school. I just don't want him to grow up feeling like an outsider. I don't want him to get run down by how hard he has to work compared to the other kids. I don't want him to get teased. I want him to be able to grow up and go to college and get married and have kids of his own and have a happy life. I know that he doesn't have to do all those things to be happy. And my most basic wish for him is that he be happy. I just wish he could escape all the work and challenges that is ahead of him. But I guess we all have our own issues and our own challenges. I know that he'll be fine. I'm just worried. One step at a time, right?
Last edited by Krisisamommy; 04-25-2008 at 04:48 PM.
I got this from a new email friend that has a 8 yo girl with autism. I think it's a great poem. I tear up almost every time I read it, but it makes me smile at the same time.
WELCOME TO HOLLAND
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy . You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice . You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland ."
" Holland ?!?" you say. "What do you mean Holland ?? I signed up for Italy ! I'm supposed to be in Italy . All my life I've dreamed of going to Italy ."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy , less flashy than Italy . But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy , you may never be free to enjoy the very special, the very lovely things ... about Holland .
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...
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. (Again, 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.
Well that’s about it. I’ll try to update more often. I like being about to look back at how things have changed. I haven't posted much on the BB lately. It's stupid, but it makes me feel sad that Thomas is so far behind. I should just get over myself and start posting again...
Last edited by Krisisamommy; 04-02-2008 at 07:21 PM.
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.
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.
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.
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.
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.
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. 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….