Some Thoughts from this Special Needs Mom

I take the nice road.
Typically.

However, there are times where my tact takes a back seat and my personality comes thru. Yes, even though I may seem upbeat most of the time, I, like all of us, have a mean streak. I say what I think, but I’m a great tipper. I like being “room mom.” I’ll do anything for a friend (especially if it involves cooking of any kind!). I am a baby freak and LOVE kids. But sometimes I’ll have an experience that brings out the worst in me. Tonight after a long day at work, battling post-stomach flu fatigue, and chasing after my boys (who right now are wrestling as I type) I decided it was time. It’s time to actually put into words what happens that really sets me off when it comes to autism and its perception in society. And what parents have to deal with each day.

Please do not take this list the wrong way. If you have done any of these things, I still love you and know you are a good person. But after the week(s) we’ve had, it’s time to vent. So here we go:

Please try not to stare.

I was in the grocery store about three weeks ago with Brody and Destin. It was time to pick out “a snack for the road” as Destin calls it before a trip out to see Matt’s family. It’s about a 45 minute drive so food is typically a requirement for the haul. We were in the cracker aisle and Des picked his typical Ritz and Brody, seeing Destin grab a snack and not quite understanding he could choose one, too, decided to smack himself in the head. Now this is under control. But from time to time, he does hit himself. We’re working on it. I picked Brody up, hugged him really tight, and gave him a “nuggy” (rubbed his head…a little hard to give him some sensation.) An elderly woman next to us just watched. She watched on as though she was intrigued in an episode of The Walking Dead. Intense. I looked up and did not say anything. But I wanted to ask her if the show was good enough…

“Are you enjoying his performance?” I almost said those words.

This happens to me about once a week and usually on the weekends…at restaurants, the mall, the park. I’d have to say restaurants are the worst. You’re in there a little longer and it’s tough to just get what you need and peace out. You have to sit there and wait for the check. I typically get not only stares of horror in restaurants during one of Brody’s episodes, but also pity. Pity is worse than the stare. Don’t pity the west county mom with a master’s degree, a devoted husband, and supportive parents. Pity the family next to me in the checkout line without any support, who can’t pay for their food, and are scraping to afford a winter coat for their child. Trust me. It’s under control. We don’t need pity.

I refuse to hide Brody or leave him at home when running errands. He needs the stimulation and 90% of the time, he’s good to go. But like all kids, they have their moments. And Brody becomes a spectacle. No one will ask or make a comment. I’d actually prefer that reaction than just a blank stare like we’re a TV show or sideshow act at a circus. I’d love to hear, “Do you need help?” That would be amazing. I would probably deny it, but I’d still appreciate the friendliness.

Please don’t ask “do you think my child has autism?”

The truth is…I have no idea. I am in no way qualified to answer this question.

I just know that when Brody was 18 months, he stopped talking. He developed a skill, and then lost this skill. And after 2 neurologists, 4 autism screenings and about 100 hours of therapy, it was determined that he has autism. So, a 10 minute meeting on the playground will tell me nothing about a child’s development. If you think your child has a disorder, see a neurologist. I have an amazing one and can help you with locating one. But I cannot and will not diagnose your baby.

I also get asked a ton of questions about my age, my pregnancy, my eating habits. The truth is, Brody does not have autism because I took Nyquil while I was pregnant, or was training for marathon when he was conceived, or because I taught English classes in my third trimester. He does not have autism because I made his baby food from scratch and spaced out his vaccines. He does not have autism because he was the second child or because he is severely cute. He was born with autism and was predisposed to develop in this way. So, please don’t ask for the intimate details about my pregnancy. My close friends and family know this information already. And never ask me to diagnose your child. I am not a doctor.

Make blanket statements like “Autistic kids have no personality.”

Have you met Brody?

If you have, you know this is definitely not true. Brody is autistic, but he is still 5 years old. He loves hugs. He is obsessed with the movie “Up.” He will try anything and has no fear. He loves everyone and has never met a stranger. When you see him, hug and kiss him; he’ll love you forever. And he is gorgeous. He has an incurable sweet tooth and gives the best high fives…as long as you ask for a “big five.” So, this statement is not only untrue, but wildly inappropriate.

Autistic kids have personalities. You just have to be patient enough for them to bring you into their world. It’s like to trying to see the hidden picture in one of those kaleidoscope posters….you have to stare at it for 30 seconds before you see the lion or duck or cloud or whatever. But if you walk away too soon, you’ll miss it.

Autistic kids are “in their own little world.”

This is a true statement. And let me explain what this actually means.

Imagine you are floating in air. And when you come down from floating, you feel a memory foam mattress. Then all of the sudden, out of nowhere, you feel a warm sensation over your body. Now imagine a relaxing massage from head to toe, with angelic spa music. Then, as abruptly as it started, this world is taken from you. You are lying in a street and it’s pouring down rain and you’re naked.

Sometimes Brody will take me into his world, and I don’t want to leave. It’s safe. Warm. Quiet. Loving. Soft. It is a world I share with him. I see why he wants to stay there. Our world can be sharp, cold, loud, painful and chaotic. I know when Brody has left his world, because he will hold on to me real tight and his heart will race. Sometimes his entrance into our world is joyful. He’ll speak a word (which is amazing) or sing, or dance to a song. But sometimes his entrance his harsh. He’ll let out the most painful sob when he realizes where he is. And we hold him and love him. We look into his eyes, hold his hands, and try to help him thru whatever he is feeling.

Matt, Destin and I only want Brody to experience love when he enters our world, so he comes to visit more often.

So yes, Brody is in his own little world. And he may never come out of it. And that’s ok. But when he is ready, the three of us will be here with open arms ready for him. And every now and then, Matt and I chase after him to bring him to join us on earth.

Every now and then, genuinely ask, “How are you doing?”

This is a question that we seldom ask each other, as human beings. It seems so simple. I’ve noticed this with my other mom friends, too. We just don’t ask each other this question. Are we scared of the response? Maybe. I think as moms we are scared to death to admit we are afraid or worried. We’d much rather admit that we have gained a few pounds than admit we feel like we are failing as parents. That is a tougher pill to swallow. It’s tough to admit that parenting is really fucking hard. And that no one told us that your kid might wet the bed for a few years, or take an extra year or two to potty train. But it happens. This thought has taken years to materialize for me, but the quality of your parenting is not decided by the cleanliness of your house or the car you drive. Your healthy children are gauge enough. Are they happy? Do they have what they need? Are they loved? Then go to bed happier tonight. And I will remind myself of this, too so I can finally breathe easier.

So, in closing, after reading this today, please do not be afraid to share the joys of your child(ren) with me or with Matt. We love children, we love hearing about the amazing things they do. We love celebrating first steps and first words and first days of school. I think it’s incredible that your children are healthy and happy. My kids are, too.

Parenting is really hard for everyone. It doesn’t matter if your child has special needs or not. We all have a screaming kid on our hip and a beer in our hand, some of us more than others. It’s time for parents to get together and realize it’s not a race or a contest.

But now, I have to get off this blog and make a peanut butter sandwich. For an eight year who needs to get back to bed.