Introduction
March 12, 2009 by Jeff Stimpson
Filed under Health
My son Alex was born almost three months early. He spent his whole first year living in a hospital (consequently, so did my wife Jill and I). But eventually he came home, started EI, dragged an oxygen cannula around after him – I used to watch Alex’s cannula swing back and forth, back and forth, while he rode his wooden rocking horse – and got carted to doctors to get rid of medical equipment and to get his diagnosis of PDD-NOS. Alex is 10 now.
Time went on and Alex started special-needs pre-school and we had another son, Ned. Ned, 8, is typically developing and intensely aware of being the sib of a brother with autism. “Rest of my life,” he sometimes says. I’ve already had a hundred, maybe a thousand times more conversations with Ned than I may ever have with Alex. Sometimes I look at Ned and think I may be his dad but I know nothing about what Ned’s life will like.
So Jill and I live in a small Manhattan apartment with two little boys, a cat, and autism. Alex is semi-verbal, but in many ways he runs the house. One or both of us get up at night when he does; wake in the morning when he does; chase him down the hall when he leaves the apartment laughing; re-arrange family events because he disrupts them; cook two meals in the early evening because hot dogs because hot dogs are pretty much all he’ll eat for dinner.
Jill and I love each other very much, but sometimes our life just makes us mad, and sometimes that means mad at each other. We do pretty well, considering. Considering that marriages don’t seem to be built to endure something like autism.
Wow, surprised to see something like this on the Hub.
It’s a mistake. It appears that someone with quite a different “take” on autism has taken over Kristina’s old “Autism Vox” blog, and now wants to piss and moan about how tough it is to raise an autistic child, and make themselves out as martyrs.
I don’t think it’s a “mistake” as you say, Clay. I have actually heard Jeff speak on Autism and he’s caring, knowledgeable, witty and much more. But he also isn’t afraid to talk about the trials and hardships of raising a wonderful child who is autistic. I think is blog is going to be fantastic with Jeff and Jill at the helm.
Would that be Kelli Ann Davis??? Thought so. Our paths already crossed today, (or almost did). I tried to leave a comment on Age of Autism right
after you did. Of course, they just had to censor it. Here it is:
I said:
“You seem to be misreading what President Obama meant when he said:
“It’s about letting scientists like those who are here today do their jobs, free from manipulation or coercion, and listening to what they tell us, even when it’s inconvenient – especially when it’s inconvenient.”
What he meant was that he’s NOT going to be manipulated and coerced by the lot of YOU!”
And yes, it was a mistake for this blog to appear on the Hub, but I corrected
it by calling attention to that fact to the Hub’s owner.
Interesting intro. I highlight this sentence “re-arrange family events because he disrupts them”
What type of family events do you mean? I find this sentence to be negative and not kind toward a child with autism, especially your own. You need to take into consideration your child, how do you prepare him for these “family events” and how does he disrupt them? Isn’t he family too?
Your life makes you both mad – I dont get what that means? I am a single parent to two boys on opposite ends of the spectrum, they are 12 and almost 14, both in Middle school and in puberty. I work around what my nonverbal son can handle. We used to do library on Sat AMs and then take walk around the lake, might take those up again once spring hits. When we go to target we visit the DVDs first so he can find something of interest. Sometimes it is one we already have, but he is content and then we shop.
I ceased contact with my family in NJ 8+ years ago (I am in CA) due to the negativity toward autism, me and my kids. I hope your negative spin is not how you speak to your other son about his sibling witha autism. There are lots of books on the subject that show autism in a positive light.
I would suggest stopping being mad and embarassed by your child with autism and embrace autism.
Wow, I think everyone needs to be a little realistic. You’re acting like Jeff just said he hates his child because he has autism. Jeff was simply pointing out that raising a child with autism is a struggle and can cause tension in a family; that if there are siblings who are not on the spectrum it has a huge impact on them. At no point did Jeff say that he didn’t love his son with all his heart!
I have a 3 year old son, Zachary who was diagnosed with PDD-NOS and I would not trade him for the world. He is my angel, my little buddy. That does not mean I will say raising and caring for him is the easiest thing in the world and that his behavior and mannersims have no effect on his sister, mother and me. The simple truth is that with Zachary we can’t do all the things we previously were able to. As with Jeff’s family, our family events revolve around Zachary and what he is able to handle. There are many things we would love to do as a family, but often one of us will take his sister and the other will take Zachary, otherwise our daughter would not be able to do the things she enjoys with us. She is great with her little brother but it would not be fair to her to restrict her activities to what Zachary was ready for.
Sure Jeff gets upset. Don’t you? We all love our kids and will do everything in our power to ensure they get the help they need but don’t get down on someone for being truthfull. If everything about having a child with autism was just fine then why are so many seeking help for themselves and their children? Were you not worried or scared when you first realized your child was not developing normally, or was regressing? Weren’t you upset? …I know I was terrified.
@Eric,
No, see, I’m an Aspie.
I too feel Jeff’s frustration!
My hubby and I have a son who is 6 and is STILL waiting for an assessment.
The pediatrician believes it could be PDD. We went to a pediatrician when he was 4 and she said he could have ADHD, but wasn’t willing to diagnose him, not knowing it could be something else. So we went on with our lives and through his preschool we were able to get help from the Child Development Centre. His first year of preschool was tough for everyone. We weren’t able to get him an aid until his 2nd year of preschool. So with reports from the aid to the child development centre, we talked to the school district about his up and coming Kindergarten year about how important it was for him to have an aid. The school district wanted a diagnosis so we went back to a different pediatrician almost a year ago and they put our name on the waiting list for an assessment. Fast Forward 11 months and here we are today waiting for a phone call to book our appointment which should happen ANY day…FINALLY!! They called us to let us know we are up next.
My son struggles in the kindergarten class with loud noises, at gym time with too many transitions and noise and seems to have a real hard time with friends. A few kids are just down right mean to him because he’s loud, quirky and silly. The teacher says he’s reading at almost a grade 2 level but will read books that are aimed at grade 3 students. He loves paper work and doing math. At home it’s been a real struggle for my hubby, our 10 year old son and I with my 6 year old special son. Going anywhere with our youngest son is a CONSTANT challenge. So yes I totally feel Jeff’s frustration!! Don’t get me wrong my son is a loving, caring wonderful child but some days I feel like I’m ready to walk away..but I don’t. He is my child and if I can’t take care of him, who will? Anyways I have this blog linked to my blog and can’t wait to read more of Jeff’s Blogs! Thank You!
Parenting- regardless of the differences that exist between any two human beings- is difficult. All too often a parent needing to relate and exchange ideas hears “Well, you shouldn’t have had kids” which is so far from helpful.
Are we really regressed to the point that we should just straighten our pillbox hats, check our teeth for lipstick, and wave with a giant frozen smile? Because all too often that’s what I read in the comments of a blog written by a parent who is taking a risk sharing the truth of their experience in hopes that they and even just one reader won’t feel like a complete freak and a terrible parent.
I have learned that there is a great deal of animosity within the autism community toward anyone not accepting any form of autism as easily as a child’s hair color- as just unemotional fact. The reality is that parenting is hard, most people with neurotypical & physically health children (because this can really be applied to any parent with any child different need that effects more than one part of that child’s life)have a support system automatically in place- they can share stories and advice with their parents, grandparents, aunts, friends, uncles, neighbors. When one realizes that their child has drastically different needs than the typically (NT) developing children of their friends and family it is incredibly alienating and exhausting as appropriate support is not longer available.
I am grateful that the internet allows us a community we wouldn’t otherwise have. I believe all of our kids, regardless of abilities, disabilities, different abilities, will have more opportunities to share their strengths with the world due to parents sharing their experiences. If one parent shares what is difficult, perhaps having that burden shared will help another parent take a much needed deep breath so that they can be a better parent to their child.
I think the most important part of any of this sharing is reminding oneself that what you are reading is not intended to be universal- it is an experience of the person writing it, it is a snapshot of that moment in their life with their child. I am aware that not everyone can differentiate, but perhaps giving the benefit of the doubt or reading more about the author can be helpful tools. The internet is instantaneous- unfortunately that means that some people shoot first and ask questions later. Perhaps the writer is intending to share a snapshot, or just writing a journal entry, but sometimes it’s a person reaching out to the community so nobody is alone in any of this, and sometimes those people don’t know how to ask for help.
If Jeff really did not accept his child as a whole, wonderful person, he probably wouldn’t be writing about it. People who take an elitist approach to autism maybe should consider that if the author was really distressed about their child, that holding out a friendly hand, rather than attacking and making what is probably a good parent (otherwise they probably wouldn’t care enough to share their story) having a hard time feel like they are a bad parent or a bad person, kindness would benefit the child, the parent, the readers, and the whole community, and by extension, the world.
Off my soapbox.
Glad to find out you are over here, Jeff. Your blog and then book really helped in the big scary beginning- it made the isolation we felt as preemie parents a little less lonely…Can’t wait to read more as we continue on our autism journey with our Alex.
I have been looking at Jeffslife.net since February for updates! Hope you don’t mind that I tracked down the updates to this blog- I’ve been reading since 2000 I think, was feeling left out of the latest news from your writings…
HMac Canadian NICU RN (formerly student RN, now 4.5 years into practice)
Clay,
The process of discovering ASD in ones child can be a long and very scary road for parents who do not have autism or who have never been in contact with a child or an adult with autism. It is a big unknown and it is a very big adjustment in all aspects of life and not always an easy transition. People are not rejecting their children by talking about the adjustments or how tired or frustrated they are, they are just venting. People with NT kids talk about things like potty training and they talk about how frustrated they are that their 2 or 3 year old isn’t potty trained yet. That doesn’t mean they don’t accept or love their child, they are looking for more information from other parents with suggestions, or even just a simple “I understand”. It is the same in people with kids who are not neurotypical or who are developing differently, only that the parents seek out parents with similar scenarios at home to ask the questions as they are more likely to get helpful information or be able to share helpful information. This isn’t martyrdom, it’s honest sharing of information that might not be accepted in any other parenting arena, due to the abundant differences in our children. As a parent of an Aspie kid I know that information I share with parents of NT kids is often ignored based on the fact that my child is not NT. I would rather be in the company of people who can understand, so maybe we can all learn something.
I hope this makes sense.
Best wishes,
Bek