As a Thinking Mom, my days are consumed by therapies, new ideas, protocols and ways to recover my son. It’s become second nature. I wake up and instinctively dive into an ocean of errands and responsibilities. I don’t blink. I don’t flinch. I don’t sweat. I don’t wait. This is all great when it comes to getting things done, but I recently realized that there are people who are deeply affected by my actions. Those people who take a step back when they see me coming, or stop mid-sentence because I had an idea and need to point it out at that moment, or perhaps internalize their joy because they see that I’m having a bad day. These are the people who suffer along with me in silence. These people are our children.
When my son suffered his first seizure, my daughter witnessed the entire thing. She sobbed as she watched her mother fall apart and collapse to the ground. She sobbed as the ambulance pulled out of the driveway and she wondered if she would ever see her baby brother again. She sobbed as her terrified grandparents tried to make sense of what had just happened. She sobbed. By the second seizure, my older son had joined her in this terrifying experience. They sobbed together as this traumatic experience took its toll on our family.
TRAUMA- “A serious injury or shock to the body, as from violence or an accident.”
My kids were traumatized. Seeing their little brother’s blue face and limp body and the terror on my face scarred them for life. My daughter had resorted to covering her ears and hiding behind furniture whenever her little brother looked “off”. My son began to question what death was. They were forever altered.
I never imagined that I would ever consider myself a neglectful parent. The word neglect seems so harsh. Me? Neglect my children’s needs? Never. However, when you have a child with special needs, you find yourself catering to their every whim. Sometimes it’s because you are trying to make up for the fact that they suffer so much. Sometimes. it’s simply because they need you, truly NEED you. By the time you realize that half of your day is gone, your NT kids have been fending for themselves all day. I’ve neglected them and feel horrible about it. I apologize, they forgive me, and we move on while we all feel the weight of what is happening.
Another parental no-no is to be unfair. If I had one cookie left, I’d break it into 3 equal pieces right? WRONG!! If that is the last gluten free cookie, guess who gets it? After all, the other 2 kids have other options for a snack. UGGHHHHH!!!!!! I feel the guilt raising every hair on my body as I speak of it. Unfairness comes in many forms. A birthday party that we cannot attend because their little brother is screaming that day, or maybe a lacrosse game I can’t make it to because it’s important that I take their little brother to therapy. Sometimes I have to say no to sleepovers or play dates because Nicky just isn’t feeling well. Maybe it’s that they can’t go on the big rides because Nick wants to go on the bumper cars over and over and over again. Perhaps it’s a missed opportunity to go to Dairy Queen because Nicky “can’t have that”. The list goes on and on.
My kids were forced to grow up too fast. They knew how to make a sandwich for themselves, get up and be ready for the bus without assistance and well……even wipe their brother’s butt if need be. They are each little adults trapped in a child’s body.
Ok….so now that you feel like complete crap about yourself (as I do on most days), wipe away the tears, pick yourself up and think of the positives. These siblings have attained a tremendous amount of knowledge. They are aware of what healthy foods they put into their bodies, are familiar with medical terms most of my adult friends don’t know, are always aware of their surroundings, keep track of what their little brother can and can’t eat or do, and know the dangers of vaccines. Their children will be better off due to this knowledge.
They are also compassionate. While most kids their age are concerned about how the world revolves around them (ahhhh childhood), our children truly care about others. They have learned that kindness, tolerance and love are more important than their own need for satisfaction.
They are helpful. My kids never fail to amaze me. Just when you think you’ve hit your limit, one of them comes along to save the day. “Let’s go on the trampoline Nicky. Mommy needs to finish cooking.” Or maybe, “I’ll help you solve that level on Mario Bros”, just as you see that your ASD child is about to have a meltdown. My favorite one is, “I’ll stay with Nicky while you run to the supermarket mommy.” They have become my little helpers. Not the cutesie “pour the chocolate chips into the bowl” kind of helper, but more like the “I don’t have to hire a maid, chef and nanny” kind of helpers. The kind of helpers that help you maintain your sanity.
They are mature. My daughter is physically very mature and doesn’t look like your average 12 year old. However, it’s the way she thinks and reacts to things that make her mature. The way they become selfless and understanding of why things are the way they are. They know how to prioritize and keep things on track. Don’t get me wrong, their rooms are a disaster, their sporting equipment is scattered about the house, and their dirty dishes may stay on the table BUT, when the shit hits the fan, I’d rather that my 10 and 12 year old be there to back me up than just about anyone else.
Autism certainly takes its toll on all of us. We all fall victim to depression, anger and fear, but it’s how we cope and handle it that truly matters. Our children have the ability to rise to the occasion. They are aware of how unfair life can be, yet they are ready to fight against that unfairness. They possess a strength that most of us can only wish for.
THEY are our future!!!!!
THEY are our hope !!!!!
THEY are Thinking Kids !!!!!!!!
…….and I am so very proud of them <3
Bianca just told me she wants to write a book about life with her brother.
I missed this one, MamaBear. It’s too bad because I can relate to a lot of the issues in it. I was only going to have two kids because I wanted to have plenty of time for both of them. Hah! “Plenty of time” just doesn’t exist in these days of therapy and supplements.
What’s really “funny” about this post is that my mostly NT child is much more demanding than my dually diagnosed kiddo (DS-ASD), so both kids get neglected. My eldest on the spectrum makes outings almost impossible as she is also physically unable to do what the littlest does. The other one who just has some anxiety, sensory, and OCD ish type of issues is very clingy and demanding. She always needs something, has to change her outfit, etc. etc. So a lot of the time (most of the time) my most severely affected gets the neglect because she is so mellow (due to the Down Syndrome) and non verbal. She only likes Barney, so you can’t really play with her too much. THAT makes me feel guilty and resentful of the other one’s neediness. But then she has anxiety, but the eldest takes some things in stride, amazingly enough. It’s all just not fair, is it. I am glad to see that you all feel like I do.
I must commend you on literally saying everything I want to say about my own family and my son and his Super Awesome big sister who is 13. What an incredible blog post. I just posted it on our business Facebook page and my own profile. I appreciate this more than you can know. ……thank you……
My “thinking kid” is now 28, a mother, just recieved her PHD and is doing autism research. She is one of the finest people I know, smart, compassionate, much nicer than I am and I am very proud of who she is whether it is because of me or in spite of me!
Been there, done that…for years. My typical kiddos know and do so much more than their peers. Some days I feel guilty that they’ve had to grow up so fast. But, they are growing up with life skills that will carry them and many others along the way.
Thanks for this wonderful post.
MamaBear, I SO love your kiddos. They are the BEST! I only hope G & R will be as good to Harry in the coming years. xoxoxo
Love this, Mamabear! My NT daughter will be going to college in a year and on top of missing her dearly, I don’t know how I will get along without her. 🙁
Thank you for sharing! I could 100% relate to you post! I was laughing and crying at the same time about the last gluten free cookie! My daughter reminds me everyday how unfair I am that she can’t do things because of her brother. I too, have so much guilt. Although, she does understands and because of it, is very mature for her age (10). Glad to know that I am not the only mother who feels this way.
I loved your post..Thank you for sharing. It got to my heart. I can relate to your feelings. It’s nice to now we are not alone. It’s great to be a Thinking mom” and support each other through this source… We are toghether on this path!!! Lol
I can relate a bit with this one. I do feel bad my daughter has to leave the playground earlier than she’d like most of the time and that I’m not the happy go lucky mom that I would love to be if I wasn’t so stressed out about getting my son recovered..yesterday.
She’s only 2 and knows her brother is “hurt”. 🙁
Love it, Mamabear!
Is anyone trying GcMAF for autism?
what is that?
yes! I posted on it under Speech, Finally! last month.