This is a topic I’ve wanted to write about for awhile. I have sat down to write it several times and have thought about what I wanted to say often.
My struggle to write this has been the desire to share and spread awareness while also protecting my children at all cost. Advocacy is sometimes a fine line. So, while you read this, please give me a little grace if I don’t go into great detail at certain times.
Parenting in general is hard.
Parenting kids from hard places proves to be another layer to figure out and work through. As parents to adopted children, we have to parent differently than others do for a variety of reasons.
In the last year, I’ve felt like I have failed my children at times. I’ve downright felt like a horrible parent when I see my kids have tough moments. As a mom, I always want to be able to take away their discomfort and many times I simply do not have the ability to do that. I felt like the rough patches we were experiencing were not “normal.” Well meaning friends gave advice that only exasperated the tough. It felt like things may not get better.
It was almost a year ago that I first recognized the struggle of one of my sons was not “normal.” I wanted to seek out professional intervention for him. However, a year ago at this time, we were still waiting out the appeals process and he had not been adopted yet. It was messy trying to get consent and approvals for him to get evaluations for additional services than he was at the time. With his AEA team, we decided last March (2021) to wait out until after adoption so we wouldn’t have to go through the state to get consents.
Jon was finally adopted in June 2021. In July, his pediatrician sent referrals for physical and occupational therapy evaluations. In our area, there are waiting lists at almost every pediatric facility near us. I called and had Jon put on wait lists at five different facilities In July of last year.
In the months that followed, I did a ton of research, talked to other adoptive parents, and consulted with his AEA team often. I really wanted answers and knew that waiting lists weren’t going to give me any. I tried to be patient, but my son needed intervention and relief.
Jon struggles with sensory regulation. He is only 2.5, but it is not like an average child his age. He does not do well with loud noises and recently we have identified that brighter lights really frustrate him. New places can overwhelm him. Unpredictability can be too much for him. I learned about sensory seeking and created sensory boxes with rice, water, lima beans, and one time beads. I taught myself about weighted blankets and noise canceling headphones. We purchased large blocks for climbing, jumping, diving, etc. We even have a trampoline in our living room. These are all things we learned about that have been known to help other kids similar to Jon.
Still though, google can only do so much. All kids are different so even experienced friends are sometimes at a loss as well. One Friday in January, I was so overwhelmed with the mom guilt that I decided to call all of the facilities that he was on waiting lists at. I had done this often, but this particular day I probably sounded more urgent, but still he was not at the top of any lists. I felt crushed.
The next day (yes a Saturday) the receptionist at our top choice called me. There had been a cancellation and they could see us for an evaluation the following week. I was elated. Finally we could start the process of getting answers. The day came and Jon and I traveled the 25 minutes to the facility. It was a lengthy evaluation. I filled out probably 50 pages in addition to the ones I brought with me. At the end, the therapist said she takes all of that and scores it against peers his age. We conferenced two weeks later for the findings.
I knew what was coming. Jon was diagnosed with sensory processing disorder. It was actually a relief because finally my son and our family can start the journey of answers. The journey of healing. SPD is not a DSM diagnosis, but it totally should be. It is typically a co-occuring disorder, but he is too young to explore and evaluate more at this time. Below is an overview definition of what SPD is.
Sensory processing disorder (SPD) is a condition in which multisensory input is not adequately processed in order to provide appropriate responses to the demands of the environment. Sensory processing disorder is present in most people with autism spectrum disorder or adhd. Individuals with SPD may inappropriately process visual, auditory, olfactory (smell), gustatory (taste), tactile (touch), vestibular (balance), proprioception (movement), and interoception (Internal) sensory stimuli.
For Jon, he is a sensory seeker. His body craves movement and weight. He is almost constantly moving…running, jumping, spinning. He loves to swing. Jon likes the feeling of tight around him. He likes tight clothing and I swaddle him when he is dysregulated. Car rides can overwhelm him, because he can’t wiggle as he needs to. That can result in screaming and we are still trying to find ways of helping him.
That day, when I read his evaluation, I was really sad for my son. I also had hope that sparked off of the pages back into my heart. My son finally, after almost a year, has weekly services. We as a family can learn more and figure out what feels good to him and what overwhelms him. It’s not going to be easy and I know he is 2.5 years old so we have a long journey ahead of us. But, I am so glad that we can provide him these tools so early in life.
I’ll admit that sometimes I feel like I fail him. I get defeated because I can’t take away his confusion and discomfort. I admittedly know and sense my frustration and anxiety when we have rougher days. It’s hard to take him places because I don’t want to cause him discomfort, but I also want him to experience the world. I have much to learn in order to parent him better. Yesterday was a tough day so I know we are still at the very beginning of our journey.
Jon is worth discomfort. Jon is worth the anxiety. Jon is worth fighting for.
Jon is more than his diagnosis. He is adorable. He has the biggest blue eyes and a smile the size of Texas. He has an evil laugh and does it often and it is the cutest thing ever. Jon has empathy and sees when I’m anxious. He gives the tightest hugs and pats your back. He demands hugs and kisses every night and I usually have to go back for more. Jon is not a huge fan of strangers, but when he knows you, he loves you big. He likes to make people laugh. He loves cars, trains, and excavators. His best friend is his big brother. He also loves his cousins and talks about them all the time. Jon is very small for his age, but he makes up for it in how big he lives life. Jon isn’t afraid to do hard things. We can all learn that from him.
This mama has very much felt alone during this season because I will fiercely protect my children even if that means sacrificing relationships. Even on the hardest days, I would choose this life over and over again. I have renewed hope in this season. Murphys are built differently–we will be okay. While I would like them to stay little forever, I am eagerly anticipating watching my little boys grow into men who will change the world.
Thanks for reading this if you made it through.
Koko
