I recently wrote on my appreciation of Julia, the newest muppet on Sesame Street. In my opinion, she provides an excellent introduction to children on the autism spectrum. Clearly Julia doesn’t represent all people with autism. It’s impossible to introduce a new character to represent many individuals with a wide array of unique characteristics that make each and every one special.
It’s nice to visit Sesame, however there’s a place a few blocks off from Sesame Street, where the air is not always sweet. It’s called Reality Road. I live here, along with the other parents and caregivers to children with special needs. The grass is greener over on Sesame Street — all misunderstandings are addressed in a calm, non-confrontational manner and everyone becomes friends. Everyone accepts everyone just as they are. No judgement. “Everything’s A-OK.”
Residents of Reality Road receive love and support, but often that support is through others on our street (and our families), not the outside communities who appear so accepting on Sesame Street. To those not from our ‘hood, we are the parents of the “weird kid that makes noises,” the kid that “clearly needs discipline” and the kid “that flaps his hands, pushes my kid and then tries to hug him.” “Doesn’t he know that’s not appropriate?” Nope, as a matter of fact, my kid doesn’t know what’s socially appropriate. We are working on that with the help of wonderful therapists and teachers. And, he is making great progress with his social skills, thank you!
Reality Road has lots of curves and sharp turns. The view constantly changes. On any given day, I go up and down this road 50 times and the view is never the same. One moment, I see joy and hope. The skies are blue, the grass is green and the flowers are in bloom. My kids are playing in the street with the others. I feel amazing and blessed. My children are awesome in so many ways: smart, kind, funny, silly, loving, creative, energetic and so much more. I love getting makeovers, “Mennell Movie Night,” playing the “Compliment Game,” “Family Fun Night” with board games and the night time snuggles in bed.
Yet, the next curve on Reality Road shows an isolated street with grey skies. I am alone with feelings of guilt, remorse, doubt and pain. I love my children with all my heart and will fight and advocate for them to no end, but this is not an easy street. I can’t just drop my kids off for a play date. I can’t leave my kids alone at a birthday party. I can’t go out for dinner with my children unless an electronic device is involved. (You can imagine the nasty stares I get). I am tired, afraid, frustrated and irritable.
I want peace and quiet. I want my kids to stop beating on each other. Don’t worry – they love it! And, when I break them up, they go back for more. They push, kick and hit one another seeking sensory input. Both of my children have Sensory Processing Disorder, SPD, which is a common symptom with Autism and ADHD. I do see this as a blessing, that both have it, because I can’t imagine what it’s like to have just one child who enjoys the physical impact while the other attempts to run away and avoid injury. I want a calm house that doesn’t involve screaming and yelling. Sadly, most of that is coming from me.
I want to go on a date with Dan and not have to stress about Amy, my 5 year old daughter with ADHD, running out of the door. FYI – Amy elopes and I don’t mean running off to Las Vegas to get married. In the special needs world, eloping means your child is a “runner.” She leaves the classroom, the house, etc. without notifying an adult. This is one of the biggest concerns to schools because of the danger associated with eloping. This is what gets kids kicked out of daycare. Without going into much detail, Amy once eloped and was “lost” for 10-min at daycare. She ran into the teachers lounge and the door closed behind her. She was found playing with the laminating machine. Thankfully, it had not been used and was cool.
I want Sam to get a haircut without it being a painful experience for him. He was able to explain “it’s like they are ripping my hair out of my head.” I am still trying to understand it myself, but a haircut is truly painful for him. Thus, it is an agonizing experience for everyone involved. The last haircut involved the stylist putting down her shears and saying “I can’t do this!” (I need to find a dedicated stylist who is good with SPD).
I want to run the vacuum cleaner when the carpets need cleaning without the children covering their ears, screaming to shut it off. While they love drinking my protein shakes, using the blender when they are in the kitchen causes mega reactions, “Turn it off! Turn it off! You are hurting my ears!” I don’t want my kids to be in pain.
I want my kids to listen when I speak. Yes, there are definitely times they are intentionally ignoring me and it’s frustrating. But, there are times when I ask Sam (this applies to Amy, too) to do something 10 times and get no response. He is so engrossed in whatever it is he is doing, he is completely oblivious to everything else. I eventually scream, “Listen to me! I am talking to you! Look at me!” Since he honestly thinks this is the first time I am addressing him, he becomes upset and has a meltdown. It’s a vicious cycle.
I struggle. They struggle.
And, now they are beginning to recognize their differences. It was beyond heartbreaking when Sam, in the middle of an epic meltdown, told his therapist “I try so hard to be good, but I just can’t.” I stood outside of the room and cried ugly tears. I was a failure. I felt like couldn’t help my son. But, it doesn’t stop me from trying.
There are days when I want to run away. And, I have. Thankfully, Dan is here. There are days when Dan and I tag team in order to take brief “sanity breaks” away from our kids. I know that sounds horrible, but we need those moments of peace to gather our inner strength and come to our senses. Together, we continue to be the best parents we can possibly be. As if on cue, the other residents from Reality Road magically appear, and embrace me. If I listen carefully, I can even hear them singing.
Sweepin’ the clouds away
On my way to where the air is sweet”