A family's story

Posts tagged ‘Inner Struggles’

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


This morning started like so many others. Jake and Tate were in our room at 5 am. Tate nudged his way onto my side of the bed. Jake sprawled on Hubz’s side. Hubz and I ended up squished in the middle. At 5:15, Cole started blaring like an alarm clock, “Mom! Mom! Mom! Mom!”. I hurtled myself over Tate and got Cole. Like the song, they all rolled over and one fell out…well, not really. We managed to squeeze all five of us into our bed. Guess that king sized mattress comes in handy again…

I tried to be lazy. I tried to close my eyes and shut it all out. But the reality was there…in bed with me. My day job was starting.

Mom, come play with me.

Mom, Cole made a mess with books in his room.

Mom, I play with your phone now.

Mom, I peed all by myself. (I am handed a pair of pj shorts to help my youngest scramble back into.)

Hon, why don’t you go take a hot shower. I’ll handle this. (I opted not to shower immediately–the new treadmill was beckoning.)

Mom, the tv won’t work. It’s broken.

Ok. Give me a minute and I’ll be down to fix it. Sigh….

I rolled out of bed and sleepily threw on my workout gear. I slathered deodorant under my arms, brushed my hair into a sloppy ponytail, and brushed my teeth. After swiping my face with a warm wet washcloth, I used my asthma meds and lumbered down the stairs. I turned into the living room and pulled clothes from the neatly sorted piles for the boys. Underwear, socks, shirts, pants…one set for Tate, one for Cole. Tate gets his brown and blue striped shirt today. Cole will be happy with his Scooby-Doo shirt. I just knew that it would be a battle to get dressed.

Mom! The tv?!

Right. Com-ing!

I slowly made my way into the sunken family room. The U-verse box was cycling. “Rethink Possible” was plastered across the tv screen. HA! I thought. I explained that the “cable” was down, so we would have to watch a DVD. The boys agreed to that compromise. I threw in a Scooby-Doo video we had borrowed from the library. Tate seemed happiest of all…until Cole pried the DVD case from his hands. A chase broke out. Whining started. Seriously…again?!

Cole, give your brother the DVD case. Tate, relax…try Mario instead. Here’s your DS. I’m going to make coffee.

Hubz came down the stairs. He asked if I got the paper. I replied that I hadn’t. He ran outside to grab it. I continue to make the coffee. I decided to make mini-chocolate chip pancakes for the boys for breakfast. 2 out of 3 boys in our household deemed them gross and inedible. That was all they were getting. Until it wasn’t…we let Tate have some cheese.

As I sat down to sip my coffee and eat my peanut butter toast, Jake happily proclaimed that the tv was working again. He got a show going for the 3 of them. Hubz read the paper. He remarked on some positive news about his team’s running back. I nodded and started to read some of my favorite blogs. I got interrupted. Again.

At some point, Hubz was getting ready to leave for the day. He has 8 am conference calls these days, so he jumps on them while driving up to work. I handle getting the kids to school. Today there was some scuffle about a missing Cub Scout Popcorn order sheet. Neither Hubz nor I know where Jake’s sheet went.  As we huffed and puffed around the house, Hubz gave up saying maybe it was at work. He’d look for it later. He then said goodbye. I felt frustrated and upset because I felt like he was blaming me for the missing sheet. When he said goodbye, I *may* have rolled my eyes. He snapped back. I asked why he seems irritated with me all the time lately. He said I seem angry with everyone and everything lately.

Sigh….he’s right. I am short with everyone. I feel very squashed right now. I am struggling. Things are going somewhat smoothly…but there’s always something. Always. I need to figure out what to do…where to go from here. I need to find some things just for me that make me happy. I need to find a way to assuage the mommy guilt that plagues me most days. I need to find a way to say no to the things that I don’t need to do. I need to find a way to feel less squashed…




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