A family's story

Rambling Thoughts…

Sometimes, I forget that I’m a parent of a special needs child. In the recesses of my mind, where I think about my life and where I am at, where I was, and where I hope to be, I don’t always factor in that two of  my sons have some challenges. They are simply “my boys”. As a parent, a mother, I love them. NO descriptors need to be used with that, right? So, when I listen to my inner monologue, I rarely use the “autistic” and “ADHD” and “special needs” descriptors because plain and simple, Tate and Jake are my sons. I love them. Period.

Of course, the reality of it all is that I do have children with some special needs. The society within which we live is not designed for individuals with different neurologies. It really seems to be designed for those of us who function within the realm of neurotypicality…whatever that means. Because my children do have needs above and beyond what other children in their age groups require, I have stress. A lot of stress. Like many people, I internalize my stress. I stuff it down. Sometimes, I trick myself into believing that I have it under control. Until I don’t.

On Sunday I mentioned to Hubz that my throat felt scratchy. I figured I was getting a cold. As I have done my workouts the past 5 days (in my 10th week of the 30 day shred. Shut up. At least I’m still moving.), I have found that they are harder, not easier. I was feeling exhausted all of the time. My head hurt. My joints were achy. Tuesday night I thought I had a mosquito bite on my back. I scratched it, and let it go, as I had to calm a certain 7-year-old’s anxieties about the start of Extended School Year. Yesterday I noticed how ITCHY my back felt as I was in the shower. As I toweled off, I angled my body to see what was going on with that mosquito bite. Holy moly!! It wasn’t a bite…it was a swatch, about 3 inches wide, on my left side. CRRRAAAPPP! The pieces started to fall together.

It all was eerily similar to the June of 2006. Tate was 2 months old and incredibly fussy–and never sleeping. Jake was demanding of all of my extra attention because he had this pesky new baby brother who always needed me. Hubz was working–a lot. I had a really bad itch on the right lower side of my back. And it was raised..and a little blister formed. Shingles.

Yes, with all of my stress, the stress that I have internalized, the shingles have returned. I luckily don’t have pain…just itching and joint discomfort. And I am so tired that I feel like I could be Rip Van Winkle and sleep for years…and maybe STILL need more sleep. I’m moving at a snail’s pace, but I’m still moving..and still able to function–mostly.

Guess I wasn’t handling that stress as well as I thought. It got the best of me. So, yeah, parents have a lot of stress. Parents of children with special needs have even more stress. We deal with more than most do on a daily basis. It is hard. It is okay to admit that it’s hard. That is not demonizing our kids or whatever needs they have. It’s a fact. We have to plan, prepare, make contingency plans, call ahead, fight with insurance, fight with insurance some more, have difficult conversations–almost every single day. We can’t rest too much, because there is always something else coming up that requires careful consideration and planning.

That being said, if you’re feeling overwhelmed. Overburdened. Overdone. Get some help. Call someone. Anyone. Help is out there. Please take advantage of it. (I, for one, am taking advantage of my in-laws offer to watch the boys overnight on Saturday. Hubz and I need the quiet. The time just for us.)

Editor’s Note: My shingles saga is a weak segue into the tragic story about Alex Spourdalakis. It has weighed heavy on my mind (and heart). All I can think of is this dependent child who lost his life when his caregivers thought there was no other way out. There is always some other way. Murder is not the answer. EVER. 

This horrific act happened in my state. It is way too close for comfort. That poor boy. While he was adult-sized, he was a boy. Innocent. Upon hearing the story when it happened over the weekend, I couldn’t get over how the police chief said they were acquainted with the boy and his family because he often had to be restrained when going to the doctor’s office. If the family was acquainted with the police department, why didn’t the mother and caregiver call the police when they were at a loss…the police could have gotten Alex out of there…to safety. DCFS had offered help. It was refused. (Even if it wasn’t enough, at least it was something…why refuse it? Why play martyr?) So many why’s and what-ifs….

So, please, if you ever feel like you’re at the end of your rope…truly at the end..and have no hope, there is always hope. Always. Here are some links for references…for lifelines…

Childhelp® –  800.4.A.CHILD (800.422.4453)

National Parent Helpline® – 855.4APARENT (855.427.2736) (available 10 a.m. to 7 p.m., PST, weekdays)

US Dept of Health and Human Services Child Welfare hotlines by state

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Comments on: "Rambling Thoughts…" (3)

  1. Your thoughts could have been plucked from my mind. I am one of the “lucky” ones with people who help. But the constant mental stress is hard. Thanks for reminding me others feel this way too and I am not alone.

  2. I became ADD last year after a doctor poisoned me with double meds. The world is now a different place, but not a bad one. Just differrent.

  3. It is not easy being parents of special needs kids. We all interalize our stressors and try and take it all on because we know what is best for our children. Sometimes we do not want to ask for help for fear of failing our children. I know this all too well. But we need to take those moments and step away and ask for help – for ourselves, for our children, for everyone.

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