Susceptibility to Autism Tied to Genes

I thought this was apropos, considering April is Autism Awareness Month. You can read the entire article here.

 

Some New Developments with Both Boys

Sorry it’s been so long! We’ve been extremely busy around here, which will become more apparent throughout this entry.

Jett is doing extremely well in school and therapies. He’s speaking in full sentences, remembering names, having conversations, and progressing very well socially, thanks to preschool, speech, and occupational therapies. He’s writing his own name, reciting the entire alphabet and identify various letters in his environment, and he’s counting up to twenty! We’re still seeing a lot of difficulty with transitions or changes from his normal routine, but he’s slowly becoming more adaptive and flexible.

Dax, on the other hand, has become a concern to us now. I’m almost positive he’s on the spectrum, even though he’s still very young (he’s 22 months). I just have a gut feeling about it. He’s exhibiting so many behaviors that just don’t seem normal, even for a child his age. If it was just speech delays alone, I wouldn’t be quite as worried, but there are other things, too.

He’s completely non-verbal. No words. He did have some, and he completely “lost” them. No babbling, no jargon – nothing. Only whining, the occasional laughter, and crying.

He’s tried to bite people, including himself, when frustrated. He tried to bite a complete stranger (one of his therapists, during his first visit with her) when he got frustrated with her because she was trying to get him to say “more” before giving him another toy.

He flaps his arms wildly when he gets excited, as if he’s pretending to be a bird. He does this several times a day when he gets excited (or overstimulated, I suppose).

He freaks out in large groups of people he doesn’t know (like at a house party, for example). He’ll cry and scream until removed, and then it takes a while for him to acclimate and calm down enough to enjoy himself. Even after that, he’s still very clingy to me and/or Tim (especially me), and if he’s ever at a point where he can’t see one of us, he’ll start to scream again.

He’s often grouping like items together when he plays, and he also lines things up. He’s appears to be obsessed with sorting things.

His eye contact with others is limited, although he does make some eye contact with me. He’s extremely (and believe when I say that “extremely” is a vast understatement) attached to me.

I know lightning can strike twice sometimes, but I seriously can’t shake the thought that I’m causing this. I know it’s not unusual to have one child on the spectrum, but two – two in a row? This is just so much to process and handle. I was just getting a grip on being a mom to one child with autism, but I fear that having a second would just completely do me in.

While I am encouraged that Jett is doing so well in school and therapy, it worries me that Dax had some words, and then lost them completely. Jett was at least saying a few words at this age, and he never regressed like this.

I’m just completely scattered right now, trying to sort through this.

Meanwhile, we’re considering some dietary eliminations for Dax – namely casein (a milk protein). Some research shows a link between casein and regressive autism (when a child regresses, or loses some skills that they once had, and then land on the autism spectrum).

It’s hard. I won’t lie. It’s really, really hard sometimes. I do my best to stay upbeat and positive, and I know that this is just a part of life, and autism does not define my child (or children, as it may be). I do my best to use every experience as an opportunity for learning and growth.

On a lighter note (well, somewhat), I thought I’d share a little funny for you.

We were in the car, and I told Tim that we would probably be having Dax evaluated for an autism spectrum disorder (ASD).

Me: You know how about 80% of married couples with children on the spectrum end up divorced or separated?

Tim: Yeah.

Me: If Dax has an ASD, does that mean that we have a 160% chance of getting divorced? Haha. ::being tongue-in-cheek, trying to lighten the mood, you know::

Tim: Well, technically you can’t have a “160% chance” of anything. You see, percentages blah blah blah…

…and he went on about percentages and math stuff that I don’t get at all. Ah, I love that man. He’s adorable.

 

Overwhelmed

As I mentioned before, Jett met with a few developmental psychologists last week for some evaluations. Their main objective, I believe, was to screen for autism spectrum disorders. I had sort of ruled out autism in my mind beforehand. He had made so much progress in speech therapy, and I think I may have been floating down that river in Egypt (denial), as I heard someone else put it.

I guess I wasn’t surprised when they said they were confident that he was high-functioning autistic. I don’t think I processed it right away, either. It’s just now starting to hit me a little more. I’ve been an emotional wreck this week.

We also had our first IEP meeting on Monday. I knew that there was a good possibility that they would recommend special education preschool for him, but again, I hadn’t fully prepared myself for that step, and I didn’t really process it right away when they brought it up. We had so much stuff thrown at us all at once. First, there was the diagnosis and all the information given to us by the psychologists. Then, there was the IEP and all the information and paperwork given to us there, and then they told us that he could start school the next day, if we wanted. We didn’t want to delay too much, since the school year had already started, and we wanted to get him started as soon as possible. Of course, I was a little daunted at the thought of sending my first child off to school for the first time, but I didn’t expect such an emotional roller coaster that day.

I wasn’t really sure what to expect, really. I figured he would probably be a little stand-offish, and maybe he would act up a little bit, but nothing extreme. Tim picked him up, and I wasn’t there, but apparently it didn’t go well at all.

When we talked to the teacher at the IEP meeting, we told her what a great kid he is, and how everyone comments on how he has such a pleasant disposition (the two developmental psychologists mentioned this), and how he’s so sweet and happy all the time. She knew about his delays, but I still think she had extremely different expectations. DH said she seemed almost exasperated at just how much of his behavior was very uncooperative, stubborn, and she even said she was surprised that he did display so many typical autistic behaviors. It was just a disappointing day overall. I could sense that he was a little stressed about it when we dropped him off, and after hearing about how tough his first day was, I just wanted to hold him and never put him through any of that stress again, even though my head knows that he needs this.

Today was a better day. We decided to only have him stay for part of the day, per the teacher’s suggestion. DH dropped him off, too, since I was afraid that I would have a complete emotional meltdown if he resisted or put up a fight going in. He did much better, so we’re definitely hopeful about the situation. I still cried about 4 times yesterday, and several times today. I’m just hormonal and overwhelmed. I have stacks and stacks of paperwork that I haven’t even had a chance to glance at yet. My mind is just going and going. I barely slept last night and the night before. I’m exhausted and worn out.

I met the sweetest lady when we went for speech therapy today. She was waiting for her son, and she started playing with Jett, and asking me questions. She said he was exactly like her son, and she asked if he was autistic. I said yes, he’s HF autistic, and we started talking. She was so sweet and supportive. She asked me when he was diagnosed, and I told her last Friday. She gave me the biggest hug. I seriously wanted to break down and start crying right there in her arms. I’ve just been feeling so lost the past couple days. Something about talking to her just made me feel like everything was going to be okay. She walked me over to the Family Connections window. They help parents with special needs kids connect with other parents for support, and she volunteers with them. They got my information so they could get me in touch with a parent partner.

Thank you for reading. It’s good to get these things off my chest.

 

We have a diagnosis.

I don’t have time to type much now, but we had our follow up consultation with the developmental psychologists. They’ve diagnosed Jett as high-functioning autistic.

This doesn’t come as much of a surprise, but I know I’m still processing it. I’ll come back to type more when I have time.

 

Developmental Psych Evaluation and Preschool Special Education Meeting

We have a very busy several days ahead of us. First off, tomorrow is an evaluation with two developmental psycho-educational specialists. This is basically to determine whether or not autism is a possibility (which I don’t believe it is at this point, but I’m not ruling anything out just yet). As far as I know, these specialists in this department mainly test for and diagnose autism, so I’m not sure if they’re going to be evaluating for any other issues, like ADD or ADHD. Those seem more likely to me right now, although I’m not sure if they diagnose ADD or ADHD at such a young age. I’m sure I’ll find out more tomorrow.

After the initial evaluation, they have the parents come back the next day to discuss the results of the testing and evaluating.

On Monday, we meet with the preschool special education department to discuss something called an IEP, or individualized education plan. Basically, they sit down with the parents and talk about how we can help Jett with his delays through preschool special education and other programs. They’ll recommend a course of action that they believe will help him, based on the testing they’ve done over the past several months. This testing included a natural setting observation, which involved a psychologist coming to our home to evaluate Jett in his natural environment. This evaluation was followed by an arena evaluation, wherein we brought Jett to a school classroom to be evaluated by a school psychologist and a speech-language pathologist. I was also interviewed about Jett several times along the way. All of these tests and evaluations, plus the speech, occupational, and hearing evaluations that were already preformed by other agencies, will be factored into the recommended IEP and will be discussed with us when we go to the meeting.

This IEP could range from additional speech and occupational therapy, to a special education preschool group class, one that would resemble just about any other preschool class. with the exception of a special education focus. The specialists will tell us what they believe to be the best program for him, and we’ll give our input and ideas as well. The meeting is designed to work with the parents to develop an IEP that will work for the whole family. If they recommend a program or therapy that we don’t feel is necessary, we’re not obligated in any way to enroll Jett in that program (although I’m fairly confident that I’ll be willing to enroll him in most programs they recommend).

I’m a little anxious about the IEP meeting, honestly. I’m hoping, for the most part, that they recommend a preschool class for him. I think the interaction with other children would be very beneficial to him, and I bet he’d love it. However, the thought of sending my little boy off to school gets me misty-eyed and, quite frankly, makes me feel old.

I’m also nervous about getting him started in school when there’s a good possibility we’re going to be moving sometime toward next spring/summer (my husband is most likely joining the Navy soon). He’s done so well with all the therapists and specialists that we’ve worked with so far. I hate to lose them. He absolutely loves his speech therapist, and everyone we’ve come in contact with so far has treated us like family. I’ll be really sad to leave them all. I’m also nervous that adjusting to a new environment will cause some regression. I’m keeping my chin up, and I’m thinking good thoughts and praying many prayers that all will go smoothly.

Thank you all for your continued support and prayers.

 

Occupational Therapy Evaluation Last Week

Overall, I think it went really well. It was nice to have some of my concerns in that area addressed and validated. The OT basically verified a lot of the suspicions that I had about Jett’s motor skills and sensory development – he’s very sensory seeking and hypo-sensitive, yet easily overstimulated visually. She also added that his motor planning skills are a little delayed, and he appears to have slightly low muscle tone in his wrists and hands.

Understanding sensory processing disorder is key for me as a parent right now. Learning how to interact with a sensory-challenged child is new territory for me, but I’m getting there. Since we’ve really noticed a lot of these behaviors in him, I’ve been reading a couple books, visiting some very informative websites, and renovating the way we go about our daily routine. For example, he started asking for baths every night. He usually gets a bath about twice a week or whenever he happens to get dirty, but I started letting him have those nightly baths since the water provides sensory input for him. Kids with sensory processing disorder (SPD) need that kind of input (or lack thereof, if they’re hypersensitive) to feel stable and “normal”, for lack of a better word. He also loves jumping. It provides deep, strong impact for his legs, so we play “jumping games”. He loves the feeling of creams and lotions on his hands and legs, so we play with lotion or liquid soap from time to time. At the grocery store, he likes to push the buggy. Pushing the weight of the groceries is not only good for the muscle tone in his arms and hands, but it gives him some of that intense sensory input that he craves. Visually, however, he tends to get a little overstimulated, so we try to give him his space if he feels overwhelmed. At his 3rd birthday party, all the people, gifts, and decorations were too much for him to handle at one point, so he left the room. Sometimes, he just needs a minute to regroup.

Our therapists have given us a lot of information on activities for sensory seeking kids, and we’re starting to implement those more and more on a daily basis.

Based on the results of the evaluation, she’s recommending weekly occupational therapy for him. Unfortunately, there’s a pretty long waiting list for OT, so it might be a while before we actually get to start therapy, but we’re on our way.

Vocabulary-wise, he’s doing much better. He’s saying more and more words, adding new ones almost daily, and he’s picking up more sentences as well. His latest is “Stop it! It’s okay!” He’ll usually say that to Dax if he’s crying or bothering him, or me, if I’m talking and he’d prefer the silence.

It’s amazing to see how much he’s progressing, and I’m so proud of him. Sometimes, though, I’ll see other children his age carrying a conversation with an adult, using full sentences and correct grammar, and I start to get discouraged. I try not to compare him to other children, but it’s hard not to sometimes. I keep reminded myself that everything about him, the way he talks, the pace at which he’s learning, his quirks – everything – is what makes him Jett, and without all those things, he wouldn’t be my Jett.

 

More Improvements

I’ve been really amazed at the progress Jett has made in just a short time. He’s putting more words together to form sentences, and his single-world vocabulary has also increased tremendously. He’s also using more signs: please, more, banana, apple, and ball are some of them.

We went to the park a few days ago, and he found a bottle cap on the ground. I instructed him to throw the cap away in the garbage can because it was trash, and that’s where we put trash. We went to the garbage can, and he found a straw wrapper as well, so we threw it in there. Later on, he started collecting acorns, which has become a park ritual of his. He started digging one out of the ground, and I said “That one’s all dirty. Maybe you should leave that one there.” He said “Dirty? Throw away, in the trash?” I was tickled to death that he made that connection and put together such a good sentence. It was a little slurred and mumbled, as many of his sentences are, but still understandable to me. 🙂

Some of his sensory issues seem to be resolving as well, but I’m starting to notice a lot of super hyperactive behavior. I know he’s always been pretty hyper, but I’m just now starting to really see it. We have our OT evaluation tomorrow morning, so we’ll find out more then.

He’s still doing ST on his own, and it’s going really well. His SLP consistently says that he’s using several words during the session, but she’s reminded us the past few times to keep working on getting him to pay attention to us. This, along with his hyperactivity, is starting to really make me consider ADHD as a big contributor to his communication and behavior issues.

More to come after his evaluation tomorrow!

 

Good week!

I talked to Jett’s SLP  last week about having him come in by himself for his next therapy session. I was truly expecting a ruckus when we decided to go for it on Tuesday, but he went all by himself, just fine. It was so bittersweet to watch him walking down the hall with her, hand in hand, like a big boy – no screaming or fighting. I had to hold back the tears.

She said he did pretty well, although he had a few outbursts, mainly because he didn’t want to stay in his chair. At his second weekly session, he was a little more resistant to go, but he eventually did so without a big fuss. She said it started out really rough – he was really not interested in Mr. Potato Head – but he eventually calmed and did well for the rest of the session. He said several words, including “more” with the accompanying sign. He usually brings that one out when she blows bubbles at the end of therapy. He loves bubbles.

It looks like we’re planning to stick with the solo therapy, which has its ups and downs. On the up side, he seems to be doing well with it, and it gives me a short half-hour break to read a magazine in the waiting area. However, I’m a little sad about possibly missing some of those great moments, when he says new words or does a new sign. It was rough sometimes, getting him to cooperate during the session, but I really enjoyed watching him learn, and of course, as a mom, it’s always a little hard to see your child off, in a way. It’s bittersweet.

 

ChildFind Evaluation Today!

Jett had a brief screening with ChildFind today. For the uninitiated, ChildFind is a program that works through the Individuals with Disabilities Education Act, or IDEA. They screened his development in five areas: physical, adaptive, social-emotional, cognitive, and communication. Jett scored average in physical and adaptive behavior, below average in social-emotional and cognitive, and delayed in communication, thus qualifying him for further evaluation at a later date. A preschool special education teacher will call us to schedule a “natural setting observation”, which means they’ll come to our home to evaluate him in his natural environment, and he’ll also have some further, more in-depth evaluations at another support center.

The results of the screening were about what I expected – no surprises there. I’m glad to finally have an in-home evaluation coming up. I’ve been hoping we could have him observed here at home. His behavior here at home is so different compared to his public behavior.

His speech seems to be improving already since speech therapy started. He’s picked up several new words, and he’s getting better at expressing a want or need without getting seriously frustrated. He still has some trouble putting two words together in a sentence without mumbling a lot. He’ll say “I want juice”, but it sounds like “uhnn juice”. That’s probably one of the clearer two-word sentences he says. Usually, the first part sounds like complete jibberish. I’ve read about developmental apraxia of speech, and trouble making two-word sentences is one of the classic signs. We’ll find out more about that during future evaluations.

Things are progressing, and we’re seeing some results. Thanks for all of your continued support and prayers. 🙂

 

More Updates

Jett’s speech-language pathologist (SLP) suggested adding an extra weekly session of therapy to his schedule, so we’ll be seeing her twice a week now, on Tuesdays and on Wednesdays. She wanted him to become more familiar with the therapy routine, so hopefully he’ll participate better. He gets very overstimulated when he’s in a new place with new people, and adding an extra day should better familiarize him with the environment.

He spent most of this past week’s session fixated on the bubbles that we played with last week, which I was afraid of. He was so distracted the whole time, asking for bubbles over and over again, that he didn’t want to pay much attention to anything else. He still did alright, considering he’d had a couple rough weeks in the past.

We have another evaluation next week with another organization – one that works through the public school system. I’m sure I’ll have more updates after that eval. I’m a little nervous about the possible outcomes, and I’m starting to get overwhelmed by all of these different organizations and appointments. I’m taking it one day at a time, just trying to keep up. Just keep swimming!