As we mark the end of Autism Awareness month, I would like to share the challenges that we, as parents, confront each day as we try to give our kids a better quality of life. As a newly-minted special needs parent, I have learned more about the special needs community in one year, than most people learn in a lifetime. The journey that you embark on when a diagnosis of Autism is confirmed is indeed extraordinary.
For those who don’t realize, special needs parents are a unique blend of tenacity, resourcefulness and seemingly endless energy. As the primary advocates for our kids, we have no choice. But, we gladly do it because the rewards are well worth it. Here are some things that you may not know about the “secret life” of a special needs parent:
People attribute your child’s behavior to “bad parenting”: Without understanding that my 8-year-old son Max has a medical condition, most people attribute everything he does to bad parenting. I’ve had neighbors, self-appointed experts, teachers and even complete strangers give me advice on how to raise and discipline my child. The fact is, my husband and I are pretty good parents. We are fully invested in all of our son’s activities and make major sacrifices so that Max can be happy and successful.
Recently, I had an elderly man lecture me in the parking lot about my son’s “lack of good manners.” Although we have taught Max to always say please and thank you (and he usually does), in this particular instance he was preoccupied by a new toy. I had to explain that Max has Autism and that if he didn’t respond by saying thank you for holding the door, it wasn’t bad manners, just his disability.
Society can be cruel: Once when Max was a toddler, I had a woman spit at me on the Boardwalk because Max was tethered to a backpack that also served as a “leash.” This was at a stage when impulse control was a big factor; Max would take off in a sprint of Olympic proportions. Perhaps the woman thought it was inhumane, but at least I knew where my kid was at all times! And, Max didn’t mind at all – he thought it was cool to wear a backpack like the older kids!
Over the years, I’ve had neighbors call the police on me, taunt my child, “prank him” and physically try to hurt him because they saw him as an easy target. When this happens, it makes you wonder who the more mature person in the equation is. Let me allay everyone’s fears that there are no child endangerments issues present in our household. My husband and I are in lockstep about how to parent our son and what types of incremental responsibility Max can be entrusted with.
Google is your new BFF: When things begin to escalate with your child – especially in school – you turn to whatever resources you can find. You spend every waking hour researching support groups, psychiatrists, specialists, new therapies, medications, blogs, lawyers and any assistance that might provide some constructive help. As you can imagine, there is no shortage of information on the Internet…unfortunately, not much of which is good or practical.
Any ‘Facebook friend’ is still a friend: Similarly, you turn to anyone – even friends from childhood that you haven’t seen or spoken to in 40 years – who might render assistance. And, you’re not ashamed to use it. Luckily, because of my career and social network, I have friends and acquaintances in all walks of life…some at the highest levels. You can believe that I turned to them and asked for help when it became clear we needed more resources on the job.
The Special Needs road map is non-existent: There is no singular plan or blueprint for how to go about securing assessments, support, services or classifications for your kid. As I told a colleague recently, the special needs system is dysfunctional, disparate and confusing. At times, I’ve thought it was deliberately “anonymous.” Every special needs parent will tell you that you have to figure it out for yourself.
When suspicions emerge, you don’t even know where to begin. The process seems overwhelming. However, you start somewhere - at a random, singular point on the care continuum and figure it out as you go along. Oh, and by the way, even when you do secure credible professional help – it often takes months or years to get an appointment.
Life is lonely and isolating: Being a special needs parent is very isolating and lonely at times. Parents avoid you at group events...and you avoid them. Often, you’re reluctant to attend extra-curricular activities with your child; if you do, you avoid making eye contact with anyone else in the room. This is usually because your kid acted out or had an issue with another child in the group. No one understands that your child has a unique medical condition that affects behavior. Therefore, ‘socialization’ won’t be perfect. Sometimes you lose friends…even those who should know better. My husband and I often say that if our child had a physical disability – something you could actually see – people would think twice before uttering their thoughtless comments.
In short, being a special needs parent is perhaps one of the most unappreciated roles on the planet. There is no designated month, fundraising campaign, lapel ribbon, or 5K race for us. While all of our energy is focused on our kids (as it should be), few understand that parents could use support too.
Your heart breaks when the birthday invitations don’t arrive: One of the first times I realized that my son was different, was at a classmate’s birthday party. Yes, he was invited because the school rules state that all children must be included. So, we did the obligatory thing and went. Max was the last one picked for bowling and no one wanted him on their team. Even with parents present, kids can be heartless. The other children clearly were not happy with Max at the party. As the complaints and insults ensued, I wanted to cry out loud. I couldn’t wait for that party to end and vowed never again to put myself in that situation. Since then, there have been few invites to parties.
As for Max’s birthday party? It was tough to fill a room. Even the lure of a karate party, cake, pizza, games and other fun stuff did not entice Max’s classmates to RSVP. We put together a great invitation, a follow-up flyer and gave parents plenty of notice. Still, very few even had the courtesy to rsvp or send regrets. When your child eventually realizes that no one wants to come to his party, your heart breaks into a million pieces. And, you would do anything to make that situation go away.
Despite everything, we wouldn’t change a thing: Even with all of the turmoil, unpredictability and heartache, most parents would tell you they wouldn’t change a thing or trade their kid for the world. Yes, parenting a special needs child is demanding and there are times when you think you’ll never get through it. But you do. And, you keep going.
I’m fortunate because my son is high-functioning on the Autism Spectrum, but nonetheless he struggles each day with Attention Deficit issues, Oppositional Defiance, Sensory issues and probably more. He flaps, he smells his hands, and he makes faces and weird noises when he’s stressed or anxious. But, Max is a beautiful child with a big heart - charming, inquisitive and enthusiastic. He is exceptional for who he is and the gifts that he was been endowed with from His Creator. And for all that, I wouldn’t change a thing.
Hollie Gilroy is mom to an 8-year-old son, Max. A veteran communications expert and state house lobbyist, Hollie now uses her advocacy skills to help Max succeed in school.