Things you should know about autistic families

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!

Inside voices

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.

Tantrums

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.

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Comments 6 comments

breathe2travel profile image

breathe2travel 6 years ago from Gulf Coast, USA

As a friend of families with autism, I have witnessed the same pain, judgment, rejection and struggle on a second-hand level. Awareness is of utmost importance in battling autism. There are so many facets and degrees of autism as well.

I pray you find a church that accepts your family as Christ has accepted you.


CRMoneysaver profile image

CRMoneysaver 6 years ago from Eastern Iowa Author

Thanks breathe2travel. I appreciate the prayers.

I really hope that more people gain an understanding. Autistic kids are different than other special needs children in that they don't have physical characteristics that "permit" more understanding from others. People seem to just think "why won't you control/discipline your child".

I will send prayers for your friends that they too can find understanding.


ediann profile image

ediann 6 years ago

I understand everything you have related in your writing on the subject and I completely identify with your situation as we experience the same type of behaviors with our son and we too have the burden of large medical bills not covered under insurance. We are in a difficult situation too with our son's meltdowns and have a hard time getting him socially intergrated. I have felt very concerned for my son because he is alone most of the time. We have tried to get him involved but our son has no interest in the various activities we have tried. He seems to like Karate which we have just started with him to learn a skill, learn discipline and make friends. It really breaks my heart to see my son alone most of the time. As his father I always plan on taking him out to a movie, the pool, a park, a ball game or museum. We try to do fun things but he also needs interaction with kids. I know what you go through because we go through it too. I am very appreciative you shared your experiences here and I am glad you are following my writings because I share our experiences on autism also. I wish you and your family all our best and offer you our moral support.

Ed


crescentaurora1 profile image

crescentaurora1 6 years ago from Alameda, CA

I have experienced similar things with my family. Though my son is only 3, his behavior can be very difficult. I try to take him out in public as well, so that he will not have a fear of socializing. But it is difficult as a parent, sometimes I don't feel like I have the strength necessary to go out of the house to a restaurant or the grocery store. A lot of people take it for granted that your child can communicate, and are disturbed if they display unusual behavior. We as parents of autistic children do need moral support, so we can be strong for our children. Thank-you for sharing your experience with you son.


shea duane profile image

shea duane 5 years ago from new jersey

People have been so nasty and harsh to my family as well. I was once tempted to actually punch a recreation golf director, and I'm not a violent person. People judge if you try to control your child's behavior, and they judge if they think you're to harsh. People can be so hard-hearted.


CRMoneysaver profile image

CRMoneysaver 5 years ago from Eastern Iowa Author

I almost got into it with someone not too long ago as well Shea. We work so hard to stay calm for our children that when people who should know better do things like that, it's just too much. I was able to force myself to walk away since Michael and Lillian were right there. Good example and all of that, but if they wouldn't have been there, I worry that I would have completely lost it. Michael still talks about the mean man. Poor little guy!

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