For the parents of Autistic Children
Jul. 20th, 2006 11:34 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
charliesmumI've just gotten a new friend who's son just got the PDD diagnosis, and she is, naturally, dealing with quite a bit of emotion right now. It made me think back to when Charlie got his diagnosis, and I thought I'd share it here, and am asking those of you with Autistic children (or family members) to share your stories as well. It might make her feel a little better.
During my lamaze class, the teacher pointed out that all women carry three children - the perfect child, the child that has everything possible wrong with it, and the real child. I'd been a bit worried, as one of the tests had come back kind of wonky, so there was this slight chance Charlie could be born with Spina Bifida or Down's or something. He wasn't, I was relieved, and settled into being a mom.
Looking back on it now, of course, I can see all the signs, but I was a new mother, and nothing was really 'off' so I just didn't really know that anything was wrong. But Charlie couldn't sit up properly, he had this habit of arching his back and looking at the world upside down, and, as he got older, he rarely made eye contact. He also didn't walk until he was almost two, and didn't talk. By that point I had taken him to some specialists, and he was diagnosed with 'Developmental Delay'. So fine. He got speech therapy, OT, was making progress, and I thought all was well.
Then, right before Christmas in 1999 the day care told me they couldn't watch Charlie any more. He was aggressive, impulsive, and kept pusing little kids down. I found him another day care that he started in the New Year, and he got kicked out of that one in two weeks. I found another one. Three weeks later he was out of that as well. No one could handle him. I found a private sitter, her son had developmental delay, and so I thought I was good. Nope. That didn't work either.
In the midst of all this I'd taken him to another neurologist and that's when I got the diagnosis. PDD/NOS, on the Autism spectrum.
It was, in a way, a relief. At least I knew there was reasons behind his recent behavior. The worst part was just not understanding what Autism was. In the few psychology classes I'd taken, I was under the impression that all Autistic people couldn't function at all in society, and it was really scary and saddening.
Fortunately my doctor was quick to assure me that there are varying degrees of Autism, and even the more severe versions aren't as hopeless as we were once led to believe. That made me feel a bit better, and over the years I've come to view Autism as not so much a 'disorder' as an extra dimention to Charlie's life. And in a way, the dignosis was a relief, too. Now I knew why Charlie was having troubles, and I knew I could do something about it. And there is plenty that can be done. Once upon a time kids with Autism would be sent to an institution, now there is therapy and diets and all kinds of things that help the child's 'recovery'.
Anyone who reads my blog for any time will see that Charlie is a bright, loving, amusing child, and I am very lucky, I think, because the Autism has kept me from taking any of his milestones for granted.
I cried the day I got the diagnosis, but now, if an angel came to me and asked if I wanted the Autism taken away, I don't know that I would say yes. It's a challenge, and it always will be, but it's also made Charlie who he is, and I could never give that up.
During my lamaze class, the teacher pointed out that all women carry three children - the perfect child, the child that has everything possible wrong with it, and the real child. I'd been a bit worried, as one of the tests had come back kind of wonky, so there was this slight chance Charlie could be born with Spina Bifida or Down's or something. He wasn't, I was relieved, and settled into being a mom.
Looking back on it now, of course, I can see all the signs, but I was a new mother, and nothing was really 'off' so I just didn't really know that anything was wrong. But Charlie couldn't sit up properly, he had this habit of arching his back and looking at the world upside down, and, as he got older, he rarely made eye contact. He also didn't walk until he was almost two, and didn't talk. By that point I had taken him to some specialists, and he was diagnosed with 'Developmental Delay'. So fine. He got speech therapy, OT, was making progress, and I thought all was well.
Then, right before Christmas in 1999 the day care told me they couldn't watch Charlie any more. He was aggressive, impulsive, and kept pusing little kids down. I found him another day care that he started in the New Year, and he got kicked out of that one in two weeks. I found another one. Three weeks later he was out of that as well. No one could handle him. I found a private sitter, her son had developmental delay, and so I thought I was good. Nope. That didn't work either.
In the midst of all this I'd taken him to another neurologist and that's when I got the diagnosis. PDD/NOS, on the Autism spectrum.
It was, in a way, a relief. At least I knew there was reasons behind his recent behavior. The worst part was just not understanding what Autism was. In the few psychology classes I'd taken, I was under the impression that all Autistic people couldn't function at all in society, and it was really scary and saddening.
Fortunately my doctor was quick to assure me that there are varying degrees of Autism, and even the more severe versions aren't as hopeless as we were once led to believe. That made me feel a bit better, and over the years I've come to view Autism as not so much a 'disorder' as an extra dimention to Charlie's life. And in a way, the dignosis was a relief, too. Now I knew why Charlie was having troubles, and I knew I could do something about it. And there is plenty that can be done. Once upon a time kids with Autism would be sent to an institution, now there is therapy and diets and all kinds of things that help the child's 'recovery'.
Anyone who reads my blog for any time will see that Charlie is a bright, loving, amusing child, and I am very lucky, I think, because the Autism has kept me from taking any of his milestones for granted.
I cried the day I got the diagnosis, but now, if an angel came to me and asked if I wanted the Autism taken away, I don't know that I would say yes. It's a challenge, and it always will be, but it's also made Charlie who he is, and I could never give that up.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
on 2006-07-20 04:18 pm (UTC)-K
no subject
on 2006-07-20 04:28 pm (UTC)My experience: in high school, I was looking for a part-time job, and came across a flyer for a 'Special Sitters' program run by the ARC. I signed up, and spent I think it was two weekends getting a first aid certification and a basic education in various developmental disabilities. The association gave my name out to various families to sit for, and the kids I was closest to were Brooke and Sam.
Brooke has Asperger's, so she was pretty high-functioning, but still a way behind her twin sister Hayley. Obviously I sat for them both (from when they were 3 to age 10), and while I loved them both, Brooke was easily my favorite. Hayley was remarkably bright for her age, and took after her mother, in that that they were both quick-witted, gregarious, very concerned with material things, and ready to lie through their teeth without a second thought. (I adored Hayley, but it's true!) Brooke was shyer, unsocial to the point of occasionally hitting if she was too bothered by someone, and equally in love with swimming and her dolls. I would take her to a class at the Y where I helped her learn to swim and to socialize a little better, and her aversion to me at first grew into love. She would run up and hug and kiss me, which, considering her usual dislike of physical contact, felt great. She also apparently developed quite a fondness for red hair, even naming her favorite redheaded doll after me! (She said I and the doll had 'mermaid hair,' after Ariel in The Little Mermaid.) Sadly, I do not see her anymore, because difficulties with payment from her mother forced me to terminate the relatrionship. (I had been sitting for the girls for almost two months without any payment - I couldn't do it anymore!) I miss them and often wonder how they're doing.
Sam has PDD, and is 14. His family is completely supportive and patient with him, which can be a pretty rare thing. We go out on bike rides a lot, as he's crazy about riding his bike, and otherwise, we occupy the time with reading, or watching a movie or playing outside. He's a bright, happy kid, and generally quite easy to sit for, save for when he gets sulky or when he's a little too giggly (he has a bit of a crush on me, which is sometimes awkward.) I guess I'm one of his favorite sitters too.
I've really loved working with these kids, not only for how great they are themselves, and how lucky I've been to see them grow and mature, but because it's helped me in turn learn to be patient and mature, and to help teach them various things. My other jobs have been mostly useless crap, but I feel that with this one I'm doing something good.
no subject
on 2006-07-20 04:36 pm (UTC)Thanks for sharing!
no subject
on 2006-07-20 06:52 pm (UTC)When I was married to Colin's father he was in the Navy, so we moved around a lot. I think I got pregnant with Colin on the road between CA and TX. We lived in TX for about eight months, stayed with my parents in MO for a couple of weeks, then went to Dan's permanent job in Denver. Colin was born in a military hospital, we left Denver and went back to MO to stay with my parents after Dan got out of the Navy. Due to a misunderstanding (we thought my dad had kicked us out) we ended up moving to southern FL when Colin about about ten months old.
So in November we went from a St. Louis winter, with snow on the ground and an average temp around freezing, to Ft. Lauderdale with a temp around 70 and a LOT of humidity. Colin developed a cold on the way down, and that started roughly a year of ear infections. It wasn't helped by Dan smoking inside our very small apartment. The ear infections didn't go away until Colin got tubes in his ears at age two.
When Colin was about twenty months, I left his father and went back to MO. The ear infections didn't go away until Colin got tubes in his ears at age two. At twenty-seven months I moved in with my current husband (Orlando FL for a month, then San Antonio TX). Back to the life of a military wife.
Colin didn't really have any playmates (he still doesn't, to my sorrow). He learned to talk from the tv, and I didn't know anything other than that he was slow to talk until he was three years old. Several months of military doctors testing, hearing tests and neurology tests and a blood test and a developmental pediatrician evaluation and they gave us the diagnosis of PDD.
I think in a way the fact that we didn't have many friends with children helped, because we didn't compare Colin with normal children, we just kind of raised him in a vaccuum. We didn't try to get him to "act normal" because we didn't have any preconceptions of what normal was.
If I had known the diagnosis before I got pregnant with my daughter, I don't know when (or if) she would have been born.
Colin has greatly improved since he started school at four. He used to be a little boy who wouldn't make eyecontact, lined his toys up, would run off if I didn't keep my eye on him every second, would tell me he was hungry by quoting Winnie the Pooh saying "Oh bother, no more honey."
He's now thirteen. We can have conversations. He loves legos still but doesn't line them up: now he builds people with them. He's developing into a talented artist. He lives in this world now, doesn't just move through it.
Whether this is rational or not, I blame my first husband's smoking for a lot of Colin's problems with interacting.
Would I want a cure for him? I don't really know. I'm happy that he seems to be outgrowing it. The meltdowns are not nearly as bad, and not nearly as often. If there had been a cure ten years ago, when he was just starting on his social development, I'd've sold my right arm for it. Sometimes I still cry, after he's in bed, and I wonder if something I did or something I am crippled my son. And sometimes I cry because the little boy he used to be grew into the junior giant who tells me I'm the best mom in the world.
no subject
on 2006-07-20 07:44 pm (UTC)Sounds to me like ya done good, esp. since you had military doctors only to help you out.
no subject
on 2006-07-21 01:49 am (UTC)I've only met his brothers once or twice, but I really admire his mother for what she does - and everyone who has autistic children. I can't imagine having that kind of patience and understanding.
no subject
on 2006-07-21 01:55 am (UTC)At the end of his eighteen month well-baby visit, I mentioned to the pediatrician that I thought it was odd that he didn't seem to know his name. Four million questions about my pregnancy, doctors visits, and whatnot later, I was the mother of a child with autism. I was told that he was one of the children that would probably never talk, would be mentally retarded, and that I should keep his home as long as possible, and then she would be happy to recommend some lovely residential facilities for children to us. They sent us on our way with a stack of incomprehensible papers and forms to fill out, and an appointment to come back in six months.
Alrighty then.
We cried for about an hour and then got busy. I knew another family who had identical twins with autism, and she put me on to a woman named Catherine Maurice, who was a big proponent of DTT. Then I learned about Greenspan. We spent about 10 hours a day on the floor with the Prince, and slowly but surely, he began to come around.
Long story short, he's ten, he's on grade level with his science, math, and reading. He's not keen on english and social studies, but he gets buy. His OT skills are still horrible, but he can type, so no one really cares. Oh, and he can talk. Boy can he talk. He never uses a 10 cent word when a hundred dollar one will due. No troubles, no melt downs, but still very definately autistic. The word Aspergers gets thrown around a lot.
If there was a magic pill to cure autism, I would be very conflicted about giving it to him. On the one hand, I love the kid I've got. I don't know the kid who doesn't have autism. On the other hand, my greatest fear is that The Prince will outlive the people who love him, so I don't know what I would do.
On the whole, I would have to say that Autism has enhanced our family more than it has caused us stress. We worked together as a team to help the Prince. The girls are much more tolerant of people with differences than their peers are. I've been able to parlay the skills and contacts I developed as a result of fighting for my son's right to an education and medical care into a lucrative career, and I have met some of the very finest human beings on the planet as a result of my son's condition.
Autism isn't a picnic, but it doesn't have to be a tragedy either.