Thursday, April 23, 2009

What's it like to have a "normal" child?

I have no idea.

By the word normal, I mean typical. Regular. What you expect to get when you get a kid. The word most people use anyway, whether or not it's PC these days or not...

I'll go ahead and say it: My kids are not normal. I can be OK with that to a point. There are a lot of people that are not normal. I sure don't mean to step on any toes here, so please don't take offense. I am in no way trying to insult anyone or anyone else's kids. But my sweet kids, they are not normal.

I have three children. E (boy) is 11, L (boy) is 6 and K (girl) is almost 2. E has Asperger's ADHD and OCD, L has high functioning Autism and K is speech impaired, very delayed in all areas and though not diagnosed yet, she stims and requires a lot of special accommodating, just like her brothers.

I suppose people feel sorry for me and my husband, but I don't want anyone to. I just would love for people to be more educated about this messed up world of Autism. How there are so many degrees, variations, exceptions, labels, theories, treatment options and it's confusing. It's not just that "your kids are delayed, they act a little strange, they'll outgrow it - hopefully". Not even close, thank you very much.

My kids look completely normal and sometimes you can look at them and would never know there is anything different about them. At first. But E has no social skills and flaps his hands against his legs and in his lap very loudly. He repeats things he heard over and over (yeah, like Rainman). L gets overwhelmed, sometimes freaks out and clamps his hands over his ears and will not take them off. He babbles like a baby in some little babble language he made up and can only put together a few words at times. K still eats baby food from a jar and still drinks from a bottle because she can't tolerate much else or she gags and throws up. She screams and goes ballistic if we go anywhere where there are too many people or there is too much noise.

The two older ones still have toilet issues and need pull-ups sometimes. They ride the special bus. They're in special ed classes. They have almost no awareness of how other kids their age behave, even when they are around them. They get upset and throw screaming temper tantrums if something we see as trivial upsets them. They don't get concepts other kids much younger than them seem to understand. We don't go to movies, the zoo, museums, the beach, the library, Chuck E Cheese,anyone's home or any other place that would be certain disaster should I be brave enough to try to take just one of them there. Too much light, noise, people, excitement, activity, etc. Yes, my kids have had complete meltdowns in public. The first rule that I learned the hard way is: don't make eye contact! When my kid starts up in public and it's getting ugly, I don't make eye contact with anyone! Focus on the child and deal with it accordingly. Yes, people look and sometimes they comment. So? I deal with my kid, not the ignorant person that isn't minding their business.

This is not even all of it. See, this Autism thing, way more than any parent bargains for..

You can't just give kids like this more discipline, or expect them to suck it up and act normal, or try to distract them with a toy or video or something. This is just who my kids are and it's all I know. And as bad as this sounds, please know that my kids are the sweetest, most beautiful babies to me. They are capable of loving us, and each other. They have strengths, skills, and something to offer. They are special and unique. And sometimes, they surprise when they do or say something typical.

I do make my kids behave, apologize when they have done something they should not have, and I am teaching them manners. I will not let Autism be an excuse for my kids to get away with doing anything that would be wrong or cause harm to others..

It's hard for me to relate to parents of typical kids. I will never know what it's like to have a normal child. And I don't know what it is that caused all of mine to have this. And it's not something I can really make anyone understand if they are not going through it themselves.

I hope this blog can help anyone that would like to understand more, either for themselves because they have a child with Autism, or as someone that wants to know more because they don't.

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  1. I think it is important for more varied images of Autism to be out there. So many of the kids people see on tv are high-functioning that it makes it seem like Autism for most parents is like dealing with a child that is a little odd or has some delays. My son is severely Autistic, not the most severe, but is in a special needs classroom out of district, stimms, has echolalia and still needs help with a lot of self care tasks. We don't take him out much either because we don't want to upset him. Although lately, when we take him out he has acted more well behaved than the "typical" kids in the store, LOL!! Like you, when we take him out and he gets upset we just focus on him and ignore other people. He has come so far from where he was and unfortunately, most strangers who see him will never know what a great kid he is and how far he has come. Keep blogging, it helps educate people who are not educated about Autism and brings comfort to those who also have children with Autism by helping them see they are not alone.

  2. Great post! I only have one ASD child and three typical. It is quite interesting to have started out raising my child with ASD (for 10 years) and then have my "typical" kids. They are really 2 different worlds.
    Thanks for the great insights!

  3. I have 3 boys. Two are typical; one has autism. It was a "piece of cake" raising the 2 typical kids compared to the autistic kid. That is the honest truth, and my autistic kid is high functioning (whatever that's worth).

  4. I'm poking around the internet and do not have children with autism but I am reading your Blog to understand and learn more about it. Just thought you should know it is working. My 7-year-old daughter has a friend who is not diagnosed, but has a lot of the symptoms. My daughter gets very frustrated with her, I am trying to learn what to tell my daughter and how to make her more educated about it. It is hard though, when the mother doesn't see a problem. She doesn't do anything repetative, but her hands are glued to her ears, she laughs inapropriatly, doen't think to cover her private parts in public, repetes phrases out of context...I just want to understand better.

  5. As I'm sitting here this summer trying to potty train my four year old girl, who is speech delayed and has ASD, I'm thinking, "autism sucks" and thought I'd Google it. Here I am. I have a six year old HF ASD. The 4 year old has a twin brother, he is NT. Hope to keep up on this place and maybe contribute something sometime.

  6. i can relate to you very well. my son has autism and displays some rather odd behaviors. he,ll go around flicking things with his fingers(table,walls,etc...) he tries to eat things which ae not edible,putting things in his mouth is a big kid looks normal,he,s had bllod work done to rule out fragile x,and that came back normal. i just don,t understand icannot figure out why my kid is like this. my wife and i both strongley feel like vaccines played a major role,but all you hear from doctors is that "vaccines do not cause Autism"ok then so where did this come from i,d like to know ,is there an invisible virus floating around that my kid caught? we just had a new baby which was born 2 months ago,and my wife and i both are weary about vaccines,were both afraid.

    1. Sir, excuse me if there are any spelling efforts. I am writing this on my phone.

      I am a thirteen year old autistic gitl, and I can absolutely assure you that vaccines do not cause autism. Autism is, as most research shows, a genetic disorder (I do hate that word) and my younger brother and one of my cousins are autistic, so I agree with the genetics theory.

      However, I can understand why you would believe the vaccine rumour. Some parents believe this for, in my opinion, one of two reasons:
      A) They wish to 'blame' the child's autism on something.
      B) They think, wrongly, that autism can be cured.

  7. It is so good to find this site where I can view my concerns. I have a 3 year old girl (4 in two months) and have felt since she was about 16 months that things weren't quite right.
    (We have a 6 year old girl as well who is NT.)
    She had glue ear so for a good 12 months we put alot of the behaviours down to hearing but as time went on the excuses began to run out.
    Does anyone have a child who talks to themselves almost acting out scenes for hours! the longest was 5 hours during the night, wide awake almost shouting but just in an imaginary world.
    We are waiting a final assessment outcome but my problem is I'm just not sure. Can anyone reassure me that they weren't sure either way whether their child had autism, or aspergers or ADD or did you always know,I really wouldnt be surprised if the outcome went either way.
    She has no problem with eye contact a litte shy with strangers, she like cuddles and hugs and wants to form relationships. Her speech is delayed she acts more like a two year old,has a thing about buttons being done up to the top, a thing about wheels and loses the plot over trivial things with nothing in the world that would console her. I sometimes feel like I'm looking for an excuse just because she is more testing than my first child. One day I think I'm imagining things the next day i think she really does have different issues to a child who is NT. Does or did anyone else feel the same???

  8. I hope you see this...since you posted anonymously, I have no way to contact you, but I wanted you to know, you are NOT alone. My 8 yr old was diagnosed when she was 6. She is very similar. Truly. We should talk. Email me at sendchocolatenow AT gmail DOT com.
    I am the founder of Autism Sucks, and have three children with high-functioning autism. You will get through this.

  9. my 2 and a half yr old son has currently undergone tests for autism,he has had blood work etc and is having a brain scan next week.he doesn't speak although did say a few words at around 16 months i.e car ball dad but then stopped at around 18months,he spins around constantly,flaps hands,refuses eye contact and closes his eyes tightly if looked at,gets hysterical with laughter or crying,stares at his hands and is constantly in a world of his own.he paseed his newborn hearing test but has recently been diagnosed with glue ear in both ears.from reading the leaflet about glue ear a lot of the symptoms echo that of autism,could glue ear be the problem and not autism after all? please help.

  10. AUTISIM a big spectrum that dosent have limits and can be in different levels even doctors do not understand why are the consecuenses of autisim, but i know one thing that is helping my son to get better, he is seven years old with a mild autisims and i have seem improvement on him by giving him fish oil, please try that ill help them to come down and focus.

  11. I've been upset ever since my daughter kicked me this morning. I sat at the computer and googled "raising a kid with special needs sucks" and came upon this. It feels great to hear other parents vent in an honest fashion. It takes guts. yesterday was a great day. I took my 9 year old (Sotos Syndrome) and 6 year old (typical) out for the day (bowling, Santa, library, fast food...)and it went perfectly. When I got home I was stunned. I felt like crying from sheer happiness that we were actually able to complete the afternoon like a "normal" family. I kept wanting to tell someone how incredible my experience was, but of course there was no one around who would really understand (I mean, so what...I took my kids out for the afternoon and they both behaved. Big deal, right?!). It feels good to know you guys are out there today. Thanks for having the guts to put up your post.

  12. I don't know what its like to raise a normal child is like either, and I may never know. Worst of all, I don't have my 3 boys anymore because the stress of it all took a toll on me and I had to put them in residential care last year after having a complete nervous breakdown and being hospitalized in a psychiatric hospital. I was diagnosed with panic disorder which has since subsided. If you ever start having panic attacks its due to the inmense stress and I recomend you bail before you breakdown completely like I did. I feel fine now but still wish I couldve done more. I am enjoying the freedom, though, of working, vacationing, restaurants etc, that i could only dream of doing when I had the kids. I wish you well, its a long and rough road....

  13. hi everyone, first time ive ever commented online about my situation, im a mum of 6 kids 2 girls and 4 boys. my girls are fine typical teens my elder son 12 is in special school for behavior difficulties they wouldnt diagnose asd cos he didnt quite meet there criteria! my second son 10 is a little star very clever and does fab in school, but my younger two are the most difficult my 7 year old has been diagnosed with asd and my 6 year old is suspected asd but still being checked at the moment, some days can be the most rewarding esp when we get the chance to go out and be a family in public and act "normal" as socitey see it....but then the other 6 days a week can be so draining and challenging for me, just today my 7 year old bit his taxi escort and kicked me, delcared he wanted me to die and get shot by prototype (computer charecter) everything my son says and does is based on a virtual world and doesnt realise that some nights i go to bed in tears over the things he says, dont get me wrong im not writing this for sympathy, but to get it out of my system i often feel sorry for myself wondering what id done wrong to get so much grief and if i had my asd son first i would never of had anymore children, i love all my children with all my heart but this blog is right autism sucks !!! big time


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