As most of my readers already know, our middle son has special needs. I’ve told the story of his first 2 years already but I wanted to share the day to day realities of raising a special needs child. Cam has Prader Willi Syndrome.
Prader Willi Syndrome typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is circa 70, but even those with normal IQs almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.
A typical PWS child meets their milestones within a few months of when it would be expected. Cam did not. He was 11 months old before he rolled over, 14 months old before he sat up, 2 before he crawled. He didn’t walk until he was 5 years old. He was not potty trained until the age of 6. He is the antithesis of everything we were told to expect. Life is difficult for Cam. He functions around the level of a 4 year old right now. Tantrums that would be expected and tolerated from a 4 year old are supremely frustrating from a 8.5 year old. Cam cannot be taken to a restaurant, his tantrums concerning food make that impossible. Taking him to the grocery store is an exercise in frustration for everyone. He spent 2 years in Pre-K through our school system’s exceptional childrens program before transitioning to a mainstreamed Kindergarten. He spent 2 years in Kindergarten and was just not progressing. He was actually regressing by the end of his second Kindergarten year. We made the decision to pull him out of public school and find an alternate source of education. I briefly considered homeschooling him but being totally honest, I do not have the patience to homeschool. We found a great special needs private school that was much closer to my parents home than to ours. We let Cam move to my parents house on a trial basis to see if the school was a good fit for him. So far, it is. He has made more progress in his short time at this private school than he did in 4 years of public school education. We have decided that as long as he continues to make progress and as long as he is happy and my parents are willing, he will stay there. Our own selfish desire to have him home is not as important as his education and his future.
I have high expectations for Cam. He is cognitively delayed quite a bit. His receptive language is age appropriate even though his expressive speech is very delayed. He knows and understands everything you say to him, which makes it even more frustrating when he chooses to play deaf or confused. It’s hard to know that the future is uncertain for Cam. While we have college funds for the other kids, he has a fund for a group home that will be required in the future. Adults with PWS do not typically live alone. They would likely kill themselves with food. Medicaid only pays a small portion of the cost of a Prader Willi specific group home, we will have to cover the rest. It is uncertain whether Cam will ever be able to get married, but he will not be able to have children. He might be able to hold down a job within the confines of his group home. It’s hard for most of us to imagine an existence as an adult where we cannot just hop in the car and go to the store. To never be able to live on your own. To have your room subject to random searches for contraband food. Think about that.
The years before Cam went to stay with my parents were difficult. We struggled with members of our family and friends who did not fully understand Prader Willi Syndrome. They did not see the problems that we had, the daily struggles, the tantrums. It was very frustrating to be told ‘Just hug him. Just love on him’ in response to a conversation about how bad his tantrums had gotten. Or to hear ‘Oh but he has special needs’ as if that was an acceptable excuse for bad behavior. It’s not an excuse. Yes, he has special needs. He still needs to learn how to function in society and interact appropriately with other people. Special needs is not an excuse, it’s a bump in the road. If he doesn’t learn to navigate that bump, he cannot continue down the road. It makes it even harder that people do not understand Prader Willi. They thought we were cruel to withhold certain foods from Cam. They didn’t see that I had to count his calories from every meal, every drink, every snack- every single day in order to control his weight gain/height ratio. It’s not something that most people would ever think to do with their children. It was a part of my daily routine. If he gained ‘X’ pounds but didn’t grow more than ‘X’ inches, I had to restrict more calories. People just thought that we were being mean and then they would try to sneak him extra food when we were not looking. Or they brought candy to the house as a treat even though we had asked them repeatedly not to do that. Or they would baby him and undo a week’s worth of work from us and his therapists. It was hard to make them see our life for what it truly was back then.
I struggled with making sure that the other kids didn’t miss out on anything because of Cam’s syndrome. I wanted to bake Christmas cookies with my kids. I wanted to do Easter baskets with those yummy gooey Cadbury Eggs inside. I wanted to make them a birthday cake and not worry that I’d find Cam on the chair, shoving fistfuls of it into his mouth. I wanted to take them to McD’s and not have to leave in a hurry when Cam would get out of control. I wanted to go trick or treating without a huge battle as Cam tried to eat every piece of candy in his bag while my back was turned. I wanted to go to the mall without having people stare at us because Cam was throwing a knock down drag out tantrum over an M&M he saw on the floor. I wanted to go to Target without being judged by other moms. And boy did they judge. The irony was that they didn’t judge Cam for his behavior. They judged me for my perceived lack of parenting. If only they knew the half of it. I used to try to educate the Judgey Judy’s that we encountered, thinking that if I could make them understand that maybe they wouldn’t judge the next special needs mom so harshly. I gave up eventually when it became clear that they did not care why my son was having a tantrum. They could not understand because they had not lived it. They had not walked in my shoes and I could see their relief that this was not their child. They wore it like a veil.
[Author’s Note: This post was originally written in February 2009 after a series of really challenging days in our house with Cam. I debated about deleting it when I transferred the old blog over here but decided to go ahead and re-post it for the very same reasons I posted it in the first place. I did update it to reflect where Cam is at now. I have a lot of readers with special needs kids and I get emails quite often from some of them. They wonder how I do it, how I keep it all running so smoothly. They are self-depreciating about their own abilities as a mom to a special needs kid. This post is for them. I don’t have it all together. My house runs anything but smoothly on most days. I have many a day where I want to hide in the closet with a bottle of Vodka. I am not a perfect mom. Not by a long shot. I’m human and I screw up. So for those who will read this post and deem me to be hateful and horrible and ungrateful- please, save the hate mail. It won’t do anything but irritate me.]