Things that Autism has taught me

Having a son with autism has taught me many things. I want to have these things written down somewhere so that I may look back on them when I need to. Sometimes I get caught up in the negatives. I am hoping that looking back on what I have learned will help get me out of those slumps when they hit. This will just be a random list. It may, at times, seem like rambling. I'm sure you can forgive me just this once, right? :)


I have learned PATIENCE. A whole new level of patience that I never knew existed or thought only belonged to the Duggars. Years ago, I would have been the mom who lost her mind. Because of Henry I have learned that I do have it within me to patiently try to deal with things that come up.

I have learned ACCEPTANCE. Accepting autism was hard for me. I remember jumping into things looking for that magical cure that doesn't exist. "Not my baby boy", I thought many times. He will not live this life. Now I know that he does live it. He lives it every, single day of his life and so do I.

I have learned TOLERANCE. I'm still working on that one, but I'm getting there. I do still want to kill people when they make ignorant comments. I just don't think about it as much now. Who am I kidding? Maybe we should scratch that one for now. Let's change it.

I have learned that those who don't accept my boy are MISSING OUT. They're missing out on what a great kid they can be. Someday, when Henry is the scientist that discovers something amazing or the artist whose work sells for millions, they will wish that they were nicer and more willing to learn about him.

I have learned that GOD did not "do this to me" or to Henry. I did this. I know when my boy regressed and I know what caused it. I also know that it happened because I did not stand up for what I believed in. Its ok. I've come to terms with it and I forgive myself. Now, we only move forward.

I have learned that THERAPY WORKS. No. Henry still isn't at the point of communicating everyday things, but he is trying. He has so many words now. His receptive language and understanding is getting so much better. Just today, I told him that we pee pee on the potty and he told me "no no no potty". I'll take sassy if it's all I can get.

I have learned that my feelings will be HURT. Not long ago, Henry said "I love you" in a way that he really meant it. He said it to someone else. That hurt more than I could have ever imagined. It hurts that he is always an angel for other people, but when its us here at home, he hits and squeezes and kicks and screams. But then a good friend, said something very comforting to me and it was that....

I am Henry's SAFE PLACE. When the rest of the world expects a well behaved child and sneers when he isn't that. I am the place that he can go when he feels the need to break down. I am the person he can go to and cry. I am the person he feels the safest with in doing that. When people stare because he is shaking his head from side to side, he always looks up at me like he is looking for reassurance. Shake away, baby. Shake away. Mommy won't let anyone say a word.

So this is where we are

I haven't updated in ages. We stay pretty busy these days. Henry is now receiving ABA therapy with a wonderful tudor 5 days a week for around 3 hours a day. We are still doing the occupational therapy, but have knocked it down to 1 hour once a week and the CBRS (play therapy for cognitive and social-emotional issues) is now at every other week for 1 hour. By the time the weekend rolls around, all of us are exhausted.

Its all helping though. Mostly the ABA, in my opinion, but I'm not ready to drop the others just yet. Henry is saying a ton of words now with prompting and quite a few with no prompting at all. He identifies many objects now and he is requesting drink ("apple juice", everything is apple juice) and food (by saying "eat"). He also asks for cookies fairly often. :)

Just this week we wrapped up the assessment for the NC pre-k exceptional children's program. He was accepted into the program and will start this coming up August. I could have had him start on his birthday, but there is only a week of school left at that point so I don't see the need to start then. The IEP is made. He will receive a 1 on 1 assistant until he adjusts to the classroom because, as you can imagine, he was very overstimulated during the time that he spent in the classroom the other day. They will provide his occupational therapy there at the school so at that time, we will no longer be doing it here at home. I hope to continue ABA after school. If it is all too much, I will then make a decision as to what his helping him along more.

I feel that him going to preschool will help our entire family out. It will provide mama with a break during the day. Henry will be able to learn to enjoy time with others or just people watch, as he loves to do. He will get time to play outdoors on playground equipment. This is something that I haven't been able to do because I can't figure out how to keep up with 2 toddlers on a playground. They both run in opposite directions and they both climb the highest thing they can find! I will be able to spend a little more 1 on 1 time with Avaleigh. I'm sure by now she thinks that therapists are just a part of everyday life. My guess is that her little world might be thrown for a loop when there aren't people showing up all day to work with "them". Yes, she thinks everyone is here to see her! I feel a little guilty because I had plenty of time for just Abigayle and myself, and this will give me plenty of time for just Avaleigh and myself, but I'm not sure how I'm going to work in time for just Henry and I. I'm sure I will work something out though.

We also just started a new metabolic supplement, but not much to report on that so far since I just began giving it to Henry today. I guess we will know soon whether we were ripped off or not, but there's no harm in giving it a try. I'm not trying to cure my boy by any means. I'm hoping that this will make him have better days without so much anger and frustration. I will report later how that is working out for us.

For now, this is all I've got! One day I'll find that balance between blogging and real life, but until then, sporadic posting is enough for me.

Autism is NOT an illness

This is something I never thought I would face. I assumed that the world around us was at least knowledgeable to know that Autism is a developmental disorder. I especially never thought that I would encounter this with medical professionals.

This all started a couple of months back. It doesn't seem that long, but I guess ,in a sleep-deprived state, one tends to lose track of time. My boy isn't sleeping. By "isn't sleeping" I mean were getting a few hours a night with no nap about 99.5% of the time. He gets to sleep just fine. He cannot stay that way for long. I have tried everything, save for a weighted blanket which I will be hopefully making this weekend.

So today, I put in a call to his pediatrician hoping that they could give us a little something to get his body reset. It was a last resort because I don't WANT to medicate him, but this is beginning to affect his quality of life. He will barely participate in therapy because of being so cranky. He walks around angry with the world all day long. He is just exhausted. So is everyone else in the house. Its starting to take it's toll on everyone.

After waiting on hold for an ungodly amount of time, we finally reached the appointments line. The conversation goes a little like this.......

Receptionist: Thank you for calling JCC. Who are we making an appointment for?

Me: Henry V....

Receptionist: And what does he need to be seen for today?

Me: He is having some sleep issues, which I know are common with Autism, so I would like to talk with Dr. E** to see if we can come up with a solution. I don't mind having to wait a bit for an appointment because I only want him to see her.

Receptionist: Hold *phone transfers*

New Receptionist: Thank you for calling JCC. Who are we making an appointment for today?

Me: Which clinic is this?

New Receptionist: The sick clinic.

Me: My son isn't sick. He does have Autism and we are having some issues that I would like to speak with his doctor about.

New Receptionist: If its dealing with his Autism, then he is sick. He has to be seen at the sick clinic.

Me: *at this point I am a little bit taken aback* You're kidding me right? He ISN'T sick.

New Receptionist: YES he is. He has Autism. He has to be seen at our sick clinic or not at all.

Me:  What about the risk of him catching the flu or this awful stomach bug going around? I caught it 2 weeks ago from being in your office (yes, my insurance assigned me to a pediatrician...whole 'nother story there).

New Receptionist: Thats a risk you'll have to take if you want to see the doctor regarding sleep issues.

Me: No it isn't. Have his records for me within 48 hours and charge his account out of your office because we will be finding a new doctor.

___________________________________________________

This is the same office that ordered a skull x-ray instead of a MRI like the pediatric neurosurgeon suggested we have done at 2 years. Within 30 minutes, he had a new doctor and hopefully tomorrow, making an appointment won't be so hard. I will switch again and again until we get what we need.

Really though. Who in their right mind calls a kid sick simply because they have Autism? IT IS NOT AN ILLNESS. I honestly wonder by the tone of this woman's voice, if she thought she could catch it from him!

I ended all of this in tears, with a sweet boy who was actually napping for the first time in months. His tudor (which I hope to write about this weekend) had managed to get him to fall asleep because even though therapy is 3 hours, he was so exhausted that she wasn't getting anywhere with him anyway. Can she just move in with us?

This is not something that parents should have to deal with. Not in this day in time.