Long Days and Sleepless Nights

I apologize that the blog has been quiet since my last post. Things have been a bit hectic and stressful around here, with lots of changes that we have been trying to settle into. Avery likes routine, and when things change, it doesn’t always work out too well.  

At the end of September, Avery got his sixth cast put on. He did an awesome job at the appointment, and adjusted very well. Thankfully we have not run into any issues while in this cast. Dr Glotzbecker said that now with Avery being over the age of two, he can go a little longer in his casts, which is great because that means less exposure to the anesthesia. His next cast change is scheduled for December 3rd, with a cast removal on November 30th. Hopefully I can keep him healthy until then. So far I haven’t had much luck with that, though, as the flu has slowly been making its way around the house multiple times. 

Last month, Avery started his ABA services. We had an issue with one therapist in the beginning, but we worked out a solution with his case supervisor and Avery is now just working with the other therapist assigned to his case until a second one can be added on. It’s hard to say how things are going, because unfortunately due to the flu, many of the appointments had to be rescheduled. So we have only had maybe 4 or 5 sessions total so far. This is all still very overwhelming, and makes for very long weeks with so many people coming in and out of our home, but I would like to think it is going well. The therapist is really amazing with him, and his case supervisor is great with him and has been very good to us so far, so I am feeling very confident that this will be a big help. 

The most recent happenings in our world is Avery’s sleep issues. Although, they are not actually that recent, as the problem started back in June/July. Avery used to have a great sleep schedule, and never had any issues at bedtime. The only time he would have problems is when he would have a new cast put on. Back in the summer, he started refusing to sleep. It has slowly been getting worse to the point where he does not finally fall asleep until sometimes almost 3am... We’ve always kept the same bedtime for him and the same routines, despite the struggles. I have tried skipping naps, making naps shorter, making him wake up earlier. I’ve tried just about everything and nothing worked. It is like his brain just does not shut off, and he is constantly going, even if he is tired and in bed. Well, finally, last week after one very long night of waiting for him to go to sleep, I called to get an appointment with his doctor. 

His doctor said that this is very common in children with autism, and that he even had one patient around Avery’s age who went through this for about two years. TWO...YEARS... yeah, that won’t work for us. Momma’s tired. I need sleep, and I’m one of those mothers that can’t sleep until her child has fallen asleep. So, his doctor referred him to see a sleep specialist for possible pediatric insomnia. Unfortunately, the sleep specialist is booked out until May, but we do have an appointment at least and we were put on the call list if there are any cancellations. Fingers crossed for cancellations so we can get in sooner! In the meantime, I’ll just have to start drinking more coffee. 

One more thing that I wanted to update on, the genetics testing. At Avery's last casting appointment, they took some blood samples for a genetics test to see if there was anything abnormal that could be the cause of his autism. Both tests, Fragile X and Chromosomal Microarray, came back NORMAL. Without getting all scientific on you, it just means that there were no abnormalities found, and as of now, the cause of autism for Avery is still unknown. I do have the option to sign him up for research groups, and other testing that can be done, but it is a lot to consider and I just don't know if I want to put him through all of that. 

Research is great to help improve screenings for diagnosing and therapy, but I feel that many people treat autism as if it were a disease... It's not. There is no cure for it... Read that again. And again, one more time. It is not a disease. There is no cure for it... It is a neurodevelopmental disorder. People think it can be cured because, thanks to programs like ABA, we learn to control and change behaviors associated with autism. For example, Avery has a difficult time with transitions. It is something we are working on with ABA to help him learn to cope better, and reduce meltdowns. When he starts preschool, and the class needs to transition from one activity to another, we need Avery to be able to handle the transition, and avoid having him act out like he does with crying/hitting/throwing objects. If you ever come to our home to visit, you will start noticing visual schedules around the house to help Avery with transitions, as well as daily tasks such as hand washing. 

That is all for now. Thank you to everyone who has been so supportive, during the good and bad days, through all of the ups and downs. This isn’t an easy journey, and at times it can be very isolating as people become very judgmental because they don’t understand, or even try to understand. So to those of you who have taken the time, and who have reached out to us with nothing but love and support, we are truly grateful to have you in our lives.