Fear and Loathing in the Parenting of an Asperger’s Child
August 24, 2006
It has taken me and the Hubby a long time to get where we are today when it comes to the advocacy of (now both of) our boys. It has been a long, hard road, that both of us never thought we would be going down. It’s a road that has made us better parents, and better people. It’s an experience that has turned our fears into fearlessness.
It began almost 11 years ago, when concerned family members pointed out that Spiff wasn’t hitting developmental milestones that other children in the family had. There were many nights of screaming, crying, colic, and vomiting. There were trips to my in-laws, where we would walk in the door, hand off our little bundle of “joy” to his grandparents, and we’d disappear in the finished basement to sleep and regain a bit of our sanity again so we could wade back into the trenches.
We begged our pediatrician to help us. We were told to “take him home and love him”. They checked his physical milestones and since they were within normal range of his age group, they couldn’t understand what we were fussing about. “He’s fine”, they’d say. “It’s just a phase, he’ll outgrow it” we were told. We felt helpless, and powerless to help our own child. We felt like horrible parents, and didn’t understand what we had done wrong, or what we needed to do next. It was very bleak.
We did playgroups, but not with the normal success that other kids enjoy with them. Spiff played around the other kids, not with them. He didn’t want to do the group activities, and chafed when we tried to get him to join in. Some days were better than others, and there would be the odd day where he would participate, would engage and we’d think, Maybe this is it, we’ve turned a corner, only to arrive the next week and he would have to be carried out kicking, screaming, and crying. I spent a lot of time making excuses, explaining my son’s behavior and my parenting skills. I began to hear the same excuses time and again come out of my mouth. We stopped going to playgroups. We began to isolate ourselves so we didn’t have to explain anymore. We stopped socializing, unless people came out to our house, because it was easier on everyone, but mostly it was easier on Spiff. When it was easier on Spiff, it was easier on us. That became our family motto.
Help came in a most unlikely place. One day Hubby brings home a pamphlet from work; our town has a Parents as Teachers program, and evaluations and services are free if you qualify. I called and set up an appointment, and a lovely woman named Julie came out and played for several hours with Spiff, making notes as she went along. She explained that through play she could determine what his strengths are, and help assess his weaknesses and offer assistance in helping him with them. She did feel that he did have some issues, and that she could help. We would meet for 2 years, once a week, and her support for both of us was invaluable. Besides her input, a family friend came out and evaluated Spiff and felt that he suffered from Sensory Integration Disorder. Finally, armed with these observations, (and a new pediatrician!) our insurance company finally agreed to send us to the nearest children’s hospital for further evaluations. We finally felt like someone was actually listening to us, and not thinking all we were doing was complaining! It felt wonderful, and yet so scary. What else was waiting for us around the corner?
We didn’t need to wait long. A diagnosis of PDD-NOS (Pervasive Developmental Disorder- Non Origin Specified) was what awaited us. We were also told, with intensive therapy, he’d outgrow it. We sailed home on those wings of hope that with a lot of work, and love, we could beat this thing.
We were wrong. They were wrong for deluding us like that.
This is not a disease. There is no “cure”. There is lots of hard work, therapy (for you and your child!), blood sweat and tears, and love. There are good days and there are bad days. There are days when you trust your instincts and there are days you don’t know which end is up. There are times when you do think you just might have licked this thing, and then you are quickly reminded that it is all a work in progress. You can experience some of the highest highs, of seeing your child master something you never thought he would accomplish, that others take for granted; and you can experience some of the lowest lows, of being called into conferences, and told your child is no longer welcome in a class, or that they don’t have the services you require any longer at your place where you receive services.
It’s everything about being a parent, but with an added twist. And that twist doesn’t go away. But it does change over time; into a rich, rewarding existence where you learn more about yourself, and what you and your child are capable of.
When did we get our wits about us? Well, it didn’t happen overnight, and I still make some mistakes along the way. I’ll admit that there are times in an IEP meeting I get intimidated among all the administrators and staff that make up my team. I don’t want to make waves, truth be told. These people have to educate my child each and every day; and I don’t want to make them resent my child because of my attitude in a meeting. Unfortunately though, I have found that unless you are assertive about what you want for your child in that environment, you usually only get the bare minimum until you make those waves. I absolutely hate being the bad guy, but when it comes to my children, scratch that – ANY child, I am more than willing to throw the most obnoxious temper tantrum to get the attention directed at what can help them.
I decided that the only people who were looking out for my child’s best interests as a whole was the Hubby and I. Every child deserves to have the same educational experience as their peers, including my son.
I set my child up for success. I don’t take no for an answer if I know it can be done. I question authority when necessary. We don’t accept anything less than what Spiff can (honestly) accomplish.
I know that all children will get from point A to point B; but there will be many different paths taken to get there; and not just the standard one will apply. I suggest re-writing the rules so that your child can participate with his peers on his terms. I have.
There is still a lot of fear left. We don’t know what the future holds for Spiff, and if it includes a “sleep away” college or a local community college; but we know it includes a college. We don’t know what will happen after Hubby and I are gone. There is still a lot of ground to cover.
What we do know is that we have come a long way from parents who didn’t know what we were doing as new parents; to dealing with a diagnosis we had never heard of; to finding our voice and making sure that others do right by our son. His younger brother may also have some issues as he gets older; but you had better believe that we will be just as vocal for his rights as we are for his brother.
Because when it comes to our children, there is nothing we will not do. Don’t you agree?
August 25th, 2006 at 4:55 am
I love that you wrote all this out. Great job. Good parent, you!
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August 25th, 2006 at 12:54 pm
I couldn’t agree more. My husband and I are trying to prepare for the IEP meeting next week for Littleman, but this is new territory we are in. The preschool early intervention services are over and we will be negotiating with a school district that has fewer resources than the birth to 5, government agency we left. Everything has been cordial and accomodating so far. They called this meeting before anyone has had the chance to meet, work with or observe our son though, which makes me believe they are ready to revoke, what were only verbal promises back in the Spring. I remain cautiously optomistic.
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August 25th, 2006 at 2:44 pm
Shash, you said it beautifully! There is NOTHING that I would not do for my son and for other children.
Recently, I had to make a very painful confrontation with a friend about her 4-year-old who is not on par with his language skills. The boy is deaf and his parents are deaf so there is absolutely no reason for him to be behind linguisitically since his entire family uses ASL to communicate. Thus I knew something else is going on with him. My friend has been obsessing over the possibility of him having ADHD because her brother has it. I told her that the ADHD is of no concern to me (I don’t think he has it anyway). The lack of language is FAR more important for her to focus on. Without language, a child cannot succeed! Even though the boy has receptive skills in ASL but he is not expressing himself at all. I’m going on and on, sorry, but my point is, I was so concerned about his language that I confronted his mother, my friend about it. Even though she was very upset with me, I am glad that I made her face the real issue instead of delaying it any longer. Hopefully, someone will help her find what is interfering with her son’s ability to express himself. It makes me angry that the school is not suspicious of something going on with that boy and the grandparents are in total denial about it!
I love your blog because I haven’t found many bloggers who have special challenges in their lives or have children with special challenges. It is always a learning opportunity for me to read other’s experiences. I am Deaf myself and have worked with many students of varying abilities. Keep up the good work! =)
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August 27th, 2006 at 2:57 pm
Thank you for writing this. I found you from Tara’s site when we commented on her post one minute apart, but from different timezones.
It’s amazing, isn’t it, how much we grow through all this. Even though when you’re in the thick of it, you just can’t see clearly from the pain at times. You, and I, and I think all parents with kids somewhere on the spectrum, have an incredible task before us, and i think it’s how we rise to the occasion that defines us. Your strength is inspiring to me.
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September 4th, 2006 at 3:08 am
I cautiously agree..cautiously because I find all the personal growth I have to go thru in order to be duckyboy’s advocate so durn PaInFuL!
Thanks from me, too, for writing this down. It helps to not be the only one.
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