I’m so glad I’m writing everything down in this blog, if for no other reason than to keep track of what we cover at appointments, as well as how Austin is changing and progressing. Life is overwhelming and such a blur right now, I would never remember anything if I wasn’t writing here and in my own personal journals. Even though it’s a difficult season for us, there is so much that I will want to remember in the future.
Before I get to today’s appointment I want to update on some things that have changed in the last few weeks. One good thing is that Austin has continued babbling, and I would say is babbling more than he ever has in the past. I hear a lot of mama and ba when he’s chattering. I love hearing his sweet little voice. Mike and I have talked so much about how we just want to hear him, and now we can 🙂
Appropriate play has continued, Austin still is loving cars & trucks. And we love playing with him! Sometimes he will pull my finger to his room and then push me down. This means “play with me mommy”!
His Eye contact continues to get even better; pretty frequently during the day Austin will look right at me and SMILE! 🙂 He definitely likes to be near his sisters, and even though he’s not playing with them yet, just the fact that he’s aware of them and prefers their company over being alone is huge progress.
Some things unfortunately have become more of a struggle lately. I mentioned at the end of my last update that Austin had begun not sleeping well, and that has gone from bad to worse. He has been taking hours to fall asleep, then banging his door handle and door in the middle of the night waking everyone up. I put all his toys away at bedtime, so he occupies himself in the middle of the night with the blinds and curtains, and pushing his bed (he discovered it slides on the hardwood floor) around. We are all pretty worn out most days. I feel like I’m in fog all the time and I’m anxious that I will lose/forget someone or something eventually!
The most difficult issue lately for us has been the big increase in self injurious behaviors (Sibs). Austin has been slamming his head SO hard on our tile floors, the walls, furniture, whatever is available. He runs full speed into the glass patio doors again, and is more aggressive with me & his therapists. He pulled a handful of my hair out this morning and tried his best to bite me. It breaks my heart to hear the thud of his head on the floor, and then seeing him rub his head and cry from pain…but that doesn’t stop him from doing it again and again. We do block a lot of the head banging by putting our hands under his head, but sometimes we just don’t get there in time.
ABA has been in full swing the past few weeks. It will never be my favorite thing being stuck at home ALL morning during summer break, and having a stranger in my house for 3 hours at a time, but I do see now the benefit to having someone come into our home and help with the behaviors that happen here. For whatever reason, Austin slowly began eating less and less until we got to where he would go a full day with almost no food whatsoever. We blamed the new diet and I felt guilty and got into the habit of giving him whatever diet approved food he asked for.
ABA stepped in and set some boundaries. He has to be in his chair to get food. He gets nothing new until he finishes his meal, and he has set mealtimes and snack times. We saw improvement immediately. This started last Friday and he hasn’t missed a meal at all since. Of course this has caused some full blown, crazy tantrums, but I stick to it and don’t give in. And eventually he will come back, sit down, and eat his food. It’s funny, this is the type of thing I did with our girls, but I somehow, without realizing it, have let Austin rule the house. And he’s one crazy dictator 😉
The ABA therapist is also helping by encouraging me to have Austin wait. Anytime he pulls my finger ( literally every 2 minutes all day) I drop whatever I’m doing and see what he wants. I was reading with one of my girls when he tried pulling my finger. The therapist stepped in and told me to tell him to wait and I would help him in a few minutes. Of course he went crazy and had a huge fit, but he is a pretty smart little guy. I’m sure he will catch on quickly.
Whew, all of that and I haven’t even gotten to the appointment! I’ll try to keep it brief. We discussed the sleep problems, the increase in sibs, and the need for speech. For sleep the doctor is having us cut back to one mg of melatonin and give Benadryl. This is temporary he said, and for now the dye free Benadryl won’t cause addiction and will hopefully help us all get some much needed rest. Tonight he was asleep in 45 minutes; hoping it lasts all night!
We are starting Austin on low dose Naltrexone to help with the sibs and aggression. This is a cream that I will put on his back or behind his ears between 9 pm-1am every evening. I’m no doctor or pharmacist so anyone interested in reading about the medicine and how it can help with autism, here’s a link for ya:http://www.theautismdoctor.com/low-dose-naltrexone-for-autism/
We are also doing more blood work to check to see if the liver enzyme that was elevated in his original blood draw has gone down. If it has then the doctor will be comfortable starting another supplement that should help with the aggression.
As far as the B-12 shots we will resume those in two weeks, keep a tiny dose (.03) and increase more slowly than the typical protocol. I’m eager to get these going while Austin is babbling so much…maybe it will help push him into starting to speak words.
That’s pretty much the last few weeks in a nutshell..at least concerning one member of this family. When you factor in the other kids and their needs, and all the things that have to be done to keep our home running….well, you get an exhausted mom whose hair is falling out in handfuls, with several strands of white growing in 😉
This is exhausting, overwhelming, never ending work. But I know it is work that we will never regret doing!