CafeMom member Jaderica is a mother to four. (Pictured here -- adorable!)
The kids, above. Tommy is wearing stripes.
While Jaderica has seen traits she describes as autistic in all four of her children, her 7-year-old, Tommy, is the child who's been diagnosed with autism.
She talks about the early signs of autism, and how many of her family members may also be on the spectrum.
Jaderica shares her frustrations with living in a society that doesn't understand autism, as well as the joys of having all of her children participate in Tommy's care.
How old was your child when you first suspected he might have autism? What were those initial signs?
I've always known that Tommy was different. The first sign was his sleep pattern; even as a newborn, he never slept very much. On average he only sleeps for about five hours a night and he stopped taking a nap when he was a year old.
Now we have him on a melatonin supplement and he sleeps about eight or nine hours, which is about where we want him to be. Even with the melatonin, we have to closely monitor his sleep because allowing him to sleep even 15 minutes beyond that nine-hour mark can mess up his sleeping pattern for several days.
However, I never suspected anything more than a sleep disorder until he had a major regression in his social and communication skills at about 20 months. At 18 months, he had a vocabulary of around 300 words and was beginning to string together simple sentences and phrases. But by age 2, he was down to a vocabulary of less than a dozen words and it was like pulling teeth to get him to use any of them. That's when we really started to explore the possibilities.
In those first moments when you found out your child's diagnosis, how did you react? And how did that reaction change over time?
Lots of moms report feeling devastated or angry, but I was actually relieved. Up until that point, the only information I had -- that I used for research -- were a few symptoms. Having the diagnosis allowed me to narrow my searches and find some real answers.
What's his exact diagnosis? And what does that mean in laymen terms?
Classic regressive autism with mild epilepsy and sensory integration disorder.
Translation: Very limited social and communication skills, hand flapping, obsessive behaviors, sleep difficulties, and few other odd behaviors that can be improved through therapy, but will often regress at apparently random intervals. The regressions are often linked to a seizure, which is why children with this type of autism are 30% to 60% more likely to have some form of epilepsy.
The sensory integration disorder exacerbates the issues, but basically throws all his senses into overdrive so that he's constantly overwhelmed by the sheer volume of input flooding into his brain, which he can't effectively filter like most people can.
What are three things you wish someone would've told you about autism that you had to learn on your own?
- I wish I had gotten a list of the warning signs and red flags associated with autism earlier -- there are a lot of them in our family and I hadn't even been aware that they were anything to be concerned about. For example, habitually walking on tiptoe all the time can be a warning sign, and Tommy has always done that. But I never thought anything of it because so do my husband, my other three kids, and my brother.
- How phenomenally clever these kids can be. Autistic is NOT the same as mentally retarded, and while Tommy is severely delayed in his language and social skills, he never ceases to amaze us with how quickly he can figure other things out. My favorite example of this: When he was a toddler and just figuring out doorknobs, we got some of those knob covers (the ones that are supposed to keep the kids from opening the door by requiring you to squeeze them at specific points in order to use the door). It was a complete waste of money for us because within the first 15 minutes, Tommy had figured out that he couldn't open the door with those things on the knobs and had figured out how to remove them!
- Finally, I wish that I had figured out sooner the importance of getting the whole family involved in helping Tommy. My husband and I and our other three kids, as well as a few of our friends and extended family, have all participated in trainings to allow us to help Tommy integrate his therapy exercises into the rest of his life. If one of the other kids is playing a game with him, they know how to put in the extra wait-time and occasional prompts to encourage him to respond appropriately to questions and remember to look at people when you're talking to them and all of those other little social things that most of us do automatically. When we're watching a movie, everyone participates in modeling. Asking for the popcorn bowl to be passed, and waiting for your turn to get another handful and then those sitting next to him help him to remember to do the same. During spring, winter, and summer breaks, we all take turns doing exercises with him that would normally be done with the therapists at school. Most of the things we do with him are very simple and a lot of them are actually fun -- but it's amazing how much of a difference that it makes when it comes to his retention and actual use of the skills we're trying to help him learn.
What or who has been your greatest resource for information and support during this time?
My fantastic family and friends are at the top of my list for this, but second place is a close tie between the website for Cambridge's Behavior Center and all the wonderful moms on the autism forums here on CafeMom.
What's been the most challenging part of dealing with a child with autism?
Dealing with people who don't know what's going on but seem to think that they know how to handle the situation better than me. The forums here are full of stories of moms being out with their kids and having some well-meaning yet ignorant person try to tell them that their child's meltdown is the result of bad parenting. My experiences haven't been any better than what those other moms have shared.
I can tell you from experience that there's very little that can push my buttons like being told that I just don't beat my kids enough, so the screaming meltdown that I've been dealing with for the past 20 minutes is all my fault. The only other thing that I can think of that even comes close is all of the media coverage for theories about how autism itself was caused by something that moms did or didn't do while we were pregnant.
Tell us something that makes your child special or unique.
It's hard for me to pick one thing that's special about Tommy. He has lots of traits that we think are unique but that I've learned aren't so unique in the extended autistic community.
Tommy speaks in multiple "voices" depending on his mood and the purpose of his speech. He has the cutest high-pitched one that you'd expect from a kid his age and a deep, gravelly growling voice, and varying degrees in between. When he was tiny -- before he lost his speech -- I thought that it was just something he did for attention. But as I've learned more about autism, I've discovered that it's actually a vocal "stim" (a repeated or ritualistic behavior meant to provided oneself with a desired sensory sensation or experience).
Finally ... the debate around the cause(s) of autism is very heated right now. What do you think causes autism?
This debate is one of my greatest irritations. As a mom of an autistic child, I often feel bombarded by well-meaning people who think that by trying to tell me where the autism came from, they're somehow improving my life. It's my opinion that autism is a combo deal -- a collection of genetic tendencies that are for whatever reason exacerbated by additional factors.
The problem with trying to pick a single culprit is that those additional factors take many forms. In some kids, it's an unusual response to a food allergy; for others, it's an extended illness or a reaction to a medication; for kids like Tommy, it's seizures. And for some, there are just too many genetic tendencies to begin with. I don't think that we'll ever find the magical single cause that so many people keep claiming that they've found.