From time to time, commenters on this blog say something like "if you were the parent of a child with autism, you'd know I'm right."
Of course, I AM the parent of a child with autism. But if there's one thing I absolutely know about parenting kids with autism it's this: each of us walks a very different road.
When Tom was first diagnosed with PDD-NOS, an autism spectrum disorder, I thought I'd attend a few support group sessions. Surely, I thought, these folks will share the experience of coping with Tom's issues -- his constant retelling of favorite videos, his inability to connect with same-age peers, his odd behaviors in preschool and on the playground. And surely they'll relate to my sense that there's no clear direction to follow in terms of treatment, education or behaviors.
I was wrong!
In my first attempt to find a group of similar parents, I found an incredible range of people. There were parents of children so disabled that a word or smile would have been a blessing. There were parents whose gifted autistic children were being bullied -- even while they enrolled in college level courses in grade 8. There were parents who were absolutely certain they knew which treatments worked and which didn't -- and were determined to convert everyone in the room to their point of view.
In the long run, I sought out and found a group of parents whose children were on the "higher-functioning" end of the autism spectrum -- simply because their concerns were more likely to mirror mine.
But the reality was that, while Tom is "higher functioning," he doesn't have Asperger syndrome. What that seems to mean (based on observation, and not on research) is that he's relatively less aware of or concerned with peer issues; more low key and relaxed; less verbally capable; less technical in his abilities; less absolute about his interests.
In a practical sense, it meant that very few of the parents in the group had the same experiences that I did. The programs that worked for their kids wouldn't work for mine. Even the worries were different.
Over the years, I've talked with many autism parents. And yes, there are certainly some who have found community with like-minded moms and dads whose kids are very similar to one another. But these are tiny sub-groups within the larger autism community.
In fact, there's really only one thing that all parents of kids with autism know: they want their children to be happy. What that means, how it's achieved, what it looks like, or what else matters is all up for grabs!
So true! My son is now 6 years old and has been diagnosed with autism since he was 3 1/2 years old. Since then, I have learned so much from other parents and discovered that no two kids with autism are alike! My son is verbal (echolalic), hyperactive, and high functioning. He has a first cousin who also has autism, but is less verbal and not as active. Even though our situations are alike in many ways and we share the challenges that a diagnosis of autism brings to our families, we also have many differences as well.
Months ago, I went to an autism conference in my area, and discovered other parents with children ranging from very high functioning (Asperger’s) to low-functioning. One thing we all had in common was that we wanted our kids to be happy and to be able to function in society to the best of their abilities. The amount of support I got from attending this conference was very helpful for me and my family, even if I didn’t come away from it wanting to try every therapy or diet mentioned.
In the early days, I went to support groups too, and was in awe how some parents were so sure about what they were doing for their child, and then of course it was the right road for me too. I’m not sure how any could be so sure about anything when for me, I had to read about this or that and most choices I had, I had no clue if it was the right choice for my son. Back then, locally, I never found one parent who had a child with autism who never slept. The only time I ever heard about it was from my son’s specialist and in their opinion of children with autism and those who didn’t sleep. The first time I met a parent also like me dealing with no sleep was virtually on-line. Until that time, I had no one to relate to about how hard it was when you have a kid ignore the need for sleep.
I have found you’re one lucky person to find other families with the exact issues you’re facing. Each child being an individual, autism can affect each so differently than another and how each child responds to whatever intervention is also individual. There is no one same answer for us all, and all we can do is share and then decide if it might work for them. But most parents when speaking about autism, the number one thing that is ever talked about is verbal communication and the parents need to hear their child’s voice. The neat thing is I can relate to a non verbal child, since that’s where my son was, to the issues you then go through once your child finds his voice and how autism greatly can affect that verbal child.
One thing we can all agree on is all kids progress at their own rates and I could no easier hurry up my kid than could hurry up another’s kid. As parents, we all want our kids to be happy and it is a daily on-going process of learning and adjusting. Also, it is ok not to know it all, and make mistakes. Not every choice a parent makes will be the right one, you’ll never know until it’s tried and if it’s not right, it’s not the end of the world.
My son sounds a lot like yours, but mine is a few years younger. I’ve connected to a lot of moms in my area and I haven’t found one single kid with a similar set of strengths and problems that my child has. However, we all have a better idea of what one another is going through, as opposed to parents of typical kids. My son doesn’t have huge sensory and anxiety issues, but those seem to be major problems for all kids in the spectrum, including the Aspies. So, even though I don’t deal with these same scenarios on a daily basis, I understand and respect what those children and families are going through when they have to leave in the middle of a party. So, yeah, I wish I had a friend who could share tips with me about raising a son that is just like mine, but, while that doesn’t happen, I’m happy venting with and supporting my friends with ASD kids of all levels of severity.
Thank you for this. It is so, so, true. The challenges from parents as to whether or not one is a ‘true’ autism parent, based solely on that parent’s opinions are sad.
This is so true. But I can’t say I’m surprised that it’s so difficult to find those in the “same boat” when I find we are “switching boats” so quickly ourselves. Every 6 months it seems we are entering a new combination of challenges as new things emerge and some of the existing challenges are (or aren’t) made more functional. I honestly believe if I were to meet “the me of 4 years ago” today, I would have a hard time relating to that woman. And I certainly don’t feel like I have found “the answers” or that I’m any more intelligent than I was then, just different.
Sandy, I laughed a bit (in a good way) when I read your comment about communication and the challenges of both the verbal and non-verbal child. My daughter was non-verbal till she was 5 and then miracle of miracle some words came or should I say some scripting came. A year and a half ago my thoughts were “I wish she could speak *sob*…I would do anything to hear her voice”. These days I think “3 weeks straight of ‘you’re my favourite deputy!’…*sob* I feel so guilty but I wish she would just be quiet!” It seems like such a dramatic switch in such a short period of time!
Many of us eventually tread some similar ground though. My brother has Aspergers and although my mom’s parenting experience was completely different from mine, I occasionally cry the same tears or rant the same rants and she once did. What we all do seem to have in common is high amounts of stress on an ongoing basis, fear for our child’s future, fatigue, frustration, occasionally guilt (real or perceived), judgement from others etc. We are not alone in these feelings. I do have to admit, I don’t really do the support group thing. I have no patience for “mom/dad with all the answers” giving me the speech on how to make my “low-functioning” child more like there’s…of course they always seem to find me. And when mom and dad’s start to get emotional, I get fidgety and want to run for the door (and it’s not because I don’t care).
Yes, I have to admit that I have learned so much more from the autism groups online than anything else. The autism conference was interesting, and I felt like I got a great deal of support from attending, but unfortunately in my area these are annual events at best.
Occasionally, I have met other parents with children with ASD’s out in public. Though we have some things in common like toilet training challenges, sleep deprivation, and sensory issues, we also have lots of differences and experiences when it comes to our own children. In all of these chance encounters, the parents have come up to me and stated that they knew my son was autistic and would introduce me to their son or daughter who was also autistic and this would open the door for some very interesting conversation–even if it didn’t last long as I was soon chasing after my very active son! LOL.
I have to say that after two years of trying to connect with other autism parents, and them never returning my call or emailing me..I quit offering. However, I have offered in my son’s Special Ed class in Preschool. Amazingly, these people have befriended me, and our children are friends. I hear a lot of people complain about public school, I’ve found it a haven for us a complete family, and so have the friends I’ve made.
I have to do a project and I choose the theme “Autism”. While growing up I always wanted to understand the different type of Autism; I have met one or two kids only. I called them special kid because there is something “mysterious” about them…something that tells me that…”I’m living in my own world….” I’m a mother of a boy, 8 years old. I love him more than my own life, and my mom used to tell me that every mom that has a “special kid” with any disabilities loves him much more and protects him more than their own kids without disabilities. Please, help me understand what you as a mom goes through while feeding your love and protection to this type of “special child”. How does society treats you, how do you feel at the end of the day? I always wanted to know, so now I have the opportunity to get closer to that theme. Please send me your e-mails and if you could share your anger, your love, and your feelings with me, so I can understand what you feel. Also, tell me how your kid is is different, what do you love the most about him….
Eniluiza@hotmail.com
So True! And thanks so much for this article.