Things you should know about autistic families
Books about what it's like to have autism
Why autistic family - not autistic child
As the mother of an autistic 5, almost 6 year old boy, I am frequently the object of glares, snide comments and even people who argue with me about my child's behavior and how I need ot control him better. This blog is an attempt to get some more information out there on what is really going on behind closed doors, how I've/others have dealt with attempts to correct my son or my parenting, and maybe provide some understanding to others. Ok... Perhaps vent a little too.
My real prayer is that others going through this won't feel so alone, and that perhaps other parents who haven't experienced the joy (and I mean joy) of raising someone like Michael (not his real name), will gain some understanding.
Additionally, it is not just my son dealing with autism. My whole family is coping with it. Lillian(also not her real name) is 2. She acts a little differently than other little girls. She was first watched by my sister in the home so the only other child she was around regularly was Michael. She doesn't know what average kids do or how they act. She is now in a daycare center and we will see what if anything changes.
My husband and I are strapped for cash. This seems to come with helping a special needs child. For a while we were trying some new biomedical interventions with Michael. Not covered by insurance of course. It sapped all of our savings and we ended up with too much credit card debt (bio doc put treatments on a credit card - ONLY payment method allowed).
Now we have interwoven what we felt helped with medication treatments for anxiety and adhd. We also take him to play therapy to help him learn some of these social cues that he needs help with. This approach is less expensive but still costs us our copays.
Additionally, the strain on me and hubby is sometimes unbearable. We can sometimes go to a restaurant to eat, sometimes Michael is unable to stay in his seat, and sometimes he just has melt down after melt down. These exposures are important for him but by the end, Hubby and I are fried. Multiply that times the number of errands, events etc that a family is required to do and you can guess at how mentally, physically and emotionally exhausted hubby and I feel by the end of the week.
Thank God Hubby and I are close and can work most things out or we would have been one of the 70% of couples with an autistic child that divorce. Things aren't always perfect but by golly, it's not for lack of effort!
Not all that long ago, my sister (our nanny at the time), my son, my daughter, and I were at the library. My sis was watching my son and daughter (we'll call them Michael and Lillian - not their real names) who were more interested in the computers than in the books while I looked for some library materials. A woman who had obviously worked hard at teaching her children to be quiet in libraries was getting louder and louder in her side comments about how libraries should be quiet places and why won't we correct him and... Finally SHE was too loud to ignore. My sister quietly told her that he was autistic. She told us that autistic children could be taught and proceeded to argue with us.
Yes, autistic children can be taught. My son is bright, loving and a joy. But social cues take a long time for him to catch on to. He doesn't understand inside voices despite me and his teachers working hard with him on the concept. Michael has two volume levels - loud and REALLY loud. Really loud comes during melt-downs/seige times. Loud is all the other times.
Library staff have never said anything regarding my children's behavior. When Michael gets too carried away or goes into melt-down, we leave. And we've done so multiple times. But a little boy excited about a computer program and speaking a little too loudly is not something you leave over.
Another place where the inside/outside voice is a large problem is church. The church we had been attending, St. Mark's on Johnson is not autism friendly. They are a loving family and really reach out to the neighborhood but do NOT disrupt service. I again would take Michael out when things would get out of control but telling me about the windows or the cross or the fact that Daddy is helping with the music isn't something I will correct him for.
The unfriendly folks have run us out of church. My husband has been back off and on to participate musically, but I won't subject my children or myself to the icy stares or grumpy people. Hubby and I are going to try another church which our friends have assured us is kid friendly but we will see if it is autism friendly as well.
Michael has recently placed our family in a state of war against his autism/behavior (one book calls it siege). The last month or so has been HORRIBLE. Granted there are some good nights in there but for the most part, it is a countdown to bedtime at our house. Many tantrums, taking toys from his sis, won't listen, won't cooperate. Here's how one day this week went...
The day started off chaotic as Michael didn't want to get up and get going for school. I finally had to say that if he didn't get his shoes on NOW, he wouldn't get to go to the neighborlady's house (she watches him for about a half hour before school). He finished and we left. It's amazing how distracting a tree between our home and the neighborlady's home can be! It took forever just to walk over there!
During the day, I received an e-mail from his teacher asking if he'd gotten his adhd meds. I said that he had and that he seemed especially irritable and distracted this morning. She said that he was refusing to sit with the other children during circle time and wouldn't stop talking. Then later had tantrumed over the oscillating fans (he LOVES)in the lunch kitchen. As he walked by to get his milk they were on, as he walked back they were off. Apparently the lunch ladies wanted to leave and shut them off. That WAS NOT how they should be according to Michael. This involved a huge screaming fit and he had to be removed from the classroom. When he was finally calm enough to return to class, he still talked about the fans and worried that they were turned off.
So that evening, he comes home and is angry he had to come home. He wants to stay at the after school program. This is a nightly occurence but he is a little more upset than normal. Then he says we don't love him, that only the woman who runs latchkey loves him. The next tantrum which lasts the remainder of the night is over a stick. Michael starts screaming so hard that the veins in his neck are standing out, his face is red, and he's sweating. He left his stick (a stick from the yard wasn't it-not sure what it was) at school and he NEEDED it. He tried to put his coat and shoes on to go and fetch it himself. We tell him no and he screams harder and is trying to push us away from the door to let himself out.
He tried to kick during time out, he wouldn't stay in his room which is what we used in the past during tantrums. Finally, I went into his room with him as he's screaming. I sat on the floor in front of the door with the light off. I looked down and didn't say a word or respond to anything. He wanted me out but I didn't move or act like I even heard even when he was screaming at me right in my face.
Eventually he calmed down enough that we could get his pj's on him and get him settled in for bed. I think he wore himself out or we may not have accomplished that. Frankly, it's a miracle someone hasn't called DHS or something as it sounds like Michael is getting badly abused.
So I guess the point of this bit is this: when the parent of an autistic child says that their child is throwing tantrums, they aren't a normal tantrum. It isn't just a 10 minute fit over not getting a toy or the dinner they want. It is full out war and by the end, Mom and Dad are cursing God, doctors, and anyone else that should be able to help but can't.