Let's first rewind to March. Bug's annual well-child appointment was coming up, and we knew the doctor was going to be asking about his speech. We talked about how he was slightly behind at his 18-month appointment, and we'd follow up when he turned 2. Here he was, a few weeks away from 2, and we knew he hadn't improved much. We sat and made a list of the words Bug had. We even included animal sounds. It was a very short list. We knew that at 2, he was supposed to be starting to use two-word phrases. We were so far from that.
Time for the appointment...the doctor said Bug is healthy and such a smart boy, but we should get a speech evaluation done. No problem, that can be done right across the hall at the children's rehab office. Hearing assessment done first - perfect hearing, like we thought. Bug loved the speech evaluation: he got to play the entire time. We did a lot of talking about Bug's behavior, habits, likes/dislikes, on and on, in addition to details about his communication. The therapists loved him.
After just a few days, we got the full report. We knew he was behind, the evaluation was just supposed to determine how far behind. Severe mixed receptive/expressive language disorder. Definitely more far behind in expressive. Age equivalencies, percentile rankings, suggested treatment, good prognosis.
The two words that stuck out in the five-page report: Severe. Disorder.
We couldn't believe those two words would be associated with our sweet, smart, adorable Bug. That's when the blaming started. Maybe we were doing something wrong, not doing enough, and that's why his speech was behind.
Luckily, we have a wonderful family who helped us get over that. It's nobody's fault that Bug is behind in speech. It's just something that happens to kids. Him needing speech therapy is not a negative reflection on our parenting. If anything, the fact that we were looking into therapy was a sign that we're being good, caring, supportive parents. All of us will work together to get him caught up.
Next up, a feeding evaluation. The speech therapist felt that with his very limited diet, we should get that done to see what was up. More guilt. Another report, this time six pages. Significant feeding difficulties. He didn't have motor issues impeding his eating, just behavioral, and maybe sensory, so guess what? let's get that checked out, too.
Want to know something fun about insurance? When a child is delayed, without a medical diagnosis (like a chromosomal abnormality, physical disability, etc.), insurance doesn't have to cover treatment. They cover evaluations to a degree, so you can know what's up, but if a kid is just delayed without a "good" reason, that means they'll catch up on their own!! You don't need therapy coverage if they'll eventually catch up!! (Sarcasm exclamation points.)
Back in February, a friend gave us the contact information for Early Intervention, a state agency that offers therapy services to every kid in the state who needs them. Since it's significantly cheaper (as in free, compared to hundreds of dollars per session) than private therapy, we needed to check them out. We were so worried that Bug wouldn't qualify, that he wouldn't have a strong enough need for their services.
Evaluation day for EI came one week after Bear's delivery. By that point, we knew exactly what questions they were going to ask about Bug's development, and what sorts of assessing they were going to do with him. We'd already done it all with the speech and feeding evaluations. We handed over those results. And, surprise, Bug was being cooperative and showing off all his strengths. It may sound weird, but we were hoping they would get at least a small glimpse in person of what his behavior can be like every day, instead of us looking like fools saying "he's not always this happy! or cooperative! he really does need help!". Finally, he lost patience and started melting down. Our service coordinator said "You all certainly need the help we can offer. You are the most patient parents I've ever seen. We'll make sure he qualifies, no matter what his tests right now say."
The EI evaluation left us feeling nothing but relief. We were finally going to get Bug the therapy he needed, and we'd get the tools we need to help him be happy, healthy, and developing as he should. EI planned to get Bug an occupational therapist, who would work on feeding and also assess his sensory needs, and a speech therapist, who would work on developing his language skills.
We had the feeling that maybe his sensory needs were the root of many problems, and we were able to get in a last-minute opening with a private OT to do a sensory evaluation. Why not, the more we know about what's going on with Bug, the better. No big blows with those results, Bug definitely has sensory processing disorder. This is all along the lines of what our EI OT found, and what we had guessed after lots of Googling and reading.
Through Mom's work at schools, she was able to work with some special-needs kids. Inevitably, she'd get a question from one of the other students, something like "Why doesn't he have to sit and do this activity? Why is she doing that, I thought it was against the rules?". Her go-to answer was always "His brain just works differently than mine and yours. He needs different things." Kids are amazing, and most of them, of a variety of ages, understood and accepted this explanation.
Bug's brain works differently than Mom's, and Dad's, and Bear's, and that other kid who is his age and talks in full sentences. That's just how he is. We have learned now, more than ever, just what that means. It means we have to change the way we act and parent and teach him because his brain just works differently. It's different, it's not wrong. We won't lie and say it's easy, because it's the hardest thing we've ever done. But it's worth it, because we love our family more than anything.
Let's finally jump to where we are now. After the OT evaluation at children's rehab, we were referred to get an evaluation for autism. This was something that we had thought about since before his hearing evaluation, but the talk of sensory disorder had quieted those fears a bit. We ended up with a Neuropsychologist who is specifically trained to help with autism. We spent an hour with her alone without Bug to talk about our concerns and why we thought he has autism. We were sent home with a couple of packets for each of us fill out about his daily behaviors. Amazingly our answers were very similar.
The next week we had two appointments with the Doctor in which we were supposed to sit and observe how he handled the activities thrown at him. The first visit was supposed to be chaotic; mission accomplished! They tried to play with games and toys and talk if possible and Bug showed her the fantastic meltdowns that he is able to muster up. The second visit was more structured which is always a struggle for bug. She was testing his cognitive abilities and the frustrations ensued. We knew that Bug was doing his best, but it was confirming for us the situations we see daily.
We had the unfortunate opportunity to wait about five days before our next meeting and the results. The Doctor showed us the scores that Bug had achieved and where he fell on the "normal" range. Unsurprisingly he was low. When we got to the final report the a-bomb was dropped. Bug was diagnosed with mild to moderate Autism Spectrum Disorder (ASD). Although we had anticipated him being on the spectrum, we weren't completely prepared to hear it out loud from a professional. The Doctor was very positive about our parenting style and patience with Bug and it was slightly comforting to know why some of our educational attempts had failed.
The Doctor starting talking to us about therapy needs and options. As she discussed the research in the field of ASD she was very focused on Applied Behavioral Analysis (ABA). This is therapy that has truly shown effective in virtually all studies but it comes at a high cost. For Bug, it is recommended that he receive intensive therapy, meaning about 25-40 hours per week! EI doesn't have that capacity since state funding isn't that adequate. What are the options? private therapy. For that amount of time we're looking at $20k-$40k per year. This would hopefully get Bug ready to transition to kindergarten in the next 2-3 years.
As was discussed earlier, Utah isn't so on board with treating cognitive disabilities. In fact each year a bill goes to the state congress and is shot down. Finally this year, after 34 states have already passed insurance reform, Utah is conducting their own study of ABA through a lottery based enrollment. The results have been mixed but it doesn't look very positive that we'll have any insurance help for a few years at best. We feel that is is unfair to be forced out of our home state in order to get proper treatment but it is an option we are having to consider due to the inability to afford the amount of private treatment needed for Bug. So this is our adventure, trying to learn the ropes of ASD, help enact change, and adapting our family to the needs of our Bug.
We plan to share what we learn in hopes that it may help others to teach themselves the tools necessary to take care of a child or loved one with ASD. We also hope to be able to inspire those around us to help enact the changes necessary in Utah to help our loved ones get the help that they need most.
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