I am a mom FIRST

If you were to conduct a Google search on Sensory Processing Disorder, the following descriptions are what you will likely find:

  1. Inability of the neurological system to appropriately manage input from the senses
  2. Difficulty coping with transitions
  3. High risk for emotional and social problems
  4. Inability to make/keep friends or be a part of a group
  5. Poor self-concept
  6. Academic/educational problems
  7. Labeled as clumsy
  8. Uncooperative
  9. Belligerent
  10. Disruptive
  11. Out of control
  12. Anxiety
  13. Depression
  14. Phobias
  15. Aggression
  16. Parents may be blamed for their child’s behavior
  17. An invisible or hidden disorder

Any ONE of these symptoms is enough to worry a parent. Our son has SPD and an anxiety disorder and over the past 10 years we have had multiple assessments completed and have seen EVERY single one of these descriptions at least once. It’s enough to make me want to crawl under my covers, bury my head under the pillow and stay there until someone wakes me from my nightmare and tells me that Thomas has miraculously recovered.

Supporting our son and helping him to learn better coping strategies is a daily struggle. When I look at the list above, the symptom that is the hardest for me to swallow is number 17, an invisible or hidden disorder. Thomas’s SPD and Anxiety might be invisible to others however, he is very aware of his challenges and struggles to fit in and self manage his symptoms. Thomas requires quite a bit of help from adults in order to recognize when he needs to take a deep breath, walk away for a sensory break or take the necessary steps to get through an anxiety attack. We have only recently begun looking at medication management which makes me want to throw up, which coincidentally is one of Thomas’s biggest phobias, which is another story for another day.

Any parent of a child with special needs will tell you that it’s not just the child that is affected but the entire family. Leah, Mark and I are also struggling with SPD and anxiety but not in the same way that Thomas has to struggle. The past 10 years has had a significant impact on our family emotionally, physically and financially and some days I wish that there was a pill that would take it all away because I just want my Thomas to feel happy, content and relaxed. I want our family to feel happy, content and relaxed.

I recently took the kids to see the Minion Movie.  Leah settled into her seat, in four year old heaven, her hands elbow deep in buttered popcorn, eyes wide, giggling at all the jokes and punch lines.  Thomas, however, had a very different experience. Within the first 15 minutes, I noticed the tell tale signs of a full blown anxiety attack. I went into combat mode and was ready to battle. I began to assess the situation.  Was it the strong smelling perfume of the woman sitting in front of us? What it the sudden darkness of the theater? Was it his own excitement about seeing the movie that has now turned on his anxiety switch? Was it the incredibly intense volume in the movie theater? Quick fact check here:

The federal Occupational Safety & Health Administration requires hearing protection in factories at 85 dB, but its regulations do not cover theaters where peak noise levels have been reported to exceed 110 dB

I could feel the heat radiating off of his body so I wrapped my arms around him and squeezed him tight, which usually helps him feel calm as he begins to regulate. His clammy hands reached for mine and I whispered in his ear that he could go to the lobby if he needed a break. He shook his head no, reaching for his stomach and  then leaning toward me to say that he thought he was going to throw up (again a HUGE phobia of his). I noticed that his breathing was rapid and shallow so I reminded him to take a deep breath. As I pulled him closer to me I could feel his heart pounding against his little chest. I quickly pulled out the ear plugs that I keep in my purse and helped Thomas place them in his ears. He took a few more deep breaths and crawled into my lap so that I could give him a better squeeze, which can be a challenge when your child is 75 pounds and 4 ft 9 inches tall.  I turned to look at Leah who was smiling from ear to ear shoving popcorn into her little heart shaped mouth, completely oblivious to what was going on.  I sat there for a minute, contemplating my options. I could take him to the lobby but then I would have to leave my four year old daughter in the theater alone. I could bring her with us to the lobby but then I would have to tell her what was happening and she always worries about her “Bubba” when he cries. I did not want to ruin the movie for her because she was having so much fun. As my arms started to shake from the viper squeeze I was performing on my son, I felt his muscles begin to relax and breathing return to normal. Eventually he was calm enough to return to his seat and finish the movie, all the way to the end.

Some days I feel raw and vulnerable because I’m not sure how much more I can take. Other days I feel bitter and pissed off and I just want a freaking break, one day without tears, anxiety, or sensory overload. Sometimes our family and friends don’t understand. I feel like we are being judged for being neurotic, over-reacting, helicopter parents. I recently read an article written by a mother of a child with mental illness. She said something that really spoke to me.

“When your child is different, you feel exposed. If your child demonstrates behavior issues, it’s as if you’re walking around with a big flashing neon “BAD PARENT” sign attached to your head.”

I know, I know, I know, I’m not a bad parent. I am trying my hardest. I want what is best for my son, blah blah blah! My brain is telling me all of these things but some days I just don’t believe the rational thoughts that are swimming in my head. Especially tonight. Tonight was an especially difficult night for our boy. A new medication that was supposed to help curb his anxiety and help him feel more calm and focused, had the exact opposite effect. He was yelling, upset, crawling out of his skin and the only thing that would calm him was to crawl into a tight space in our master closet and hide underneath the piles of clothes and boxes because the pressure calms him down. I find it ironic that my child finds tight places calming because I am ferociously afraid of tight spaces.

Our son tries so hard to fit in with the other kids. He’s not as fast, not as coordinated, not as confident. It’s absolutely heartbreaking to watch and some days I just don’t know what else to do. it. The therapists and professionals tell us, “Continue to encourage him to participate in those kinds of things.” And we do. I search the local Activity guides and sign him up for things like tree climbing, Tae Kwan Do, and guitar lessons. He frequently quits halfway through the season because he cannot bare the thought of performing poorly in front of his peers. We try so hard to help him develop good healthy friendships but I cannot even keep track of how many times we have had to leave a birthday party early because the noise was just too much for him to take. There have been 12:30 am phone calls from other parents saying that Thomas was in tears and just could not make it through the sleepover at a friend’s house.

Don’t get me wrong, there have been accomplishments. He is seeing a therapist who is teaching us new ways to encourage Thomas to express himself and learn better coping strategies. At 10 years old, he finally found the courage to join the swim team. this past summer. During the two months of swim season, I worried every day that he would begin comparing himself to the other children. I worried that the starting buzzer would be too loud for him, triggering his flight or fight response. I worried that he would give up in the middle of swimming a lap and not make it to the finish line, while his peers watched in dismay. I worried when he got strep, an ear infection and another tooth abcess (all at the same time) that he would loose his motivation. I spent the entire swim team season isolating myself from the other moms. I was not willing to be subjected to the comparisons of their exceptionally athletic children to my sweet boy who was finally proud of himself and worked so hard to be an “average” swimmer. He did not come in first or even second or third and was disqualified several times due to an incorrect stroke but he still swam his little heart out and finished each race. More importantly he finished the season!

I am fortunate enough to have a job that allows me to be surrounded by parents of children with disabilities. I help families get connected to resources for their children. I listen with empathy to parents as they explain the frustrations of raising a child with a disability. I attend conferences where I meet wonderful professionals who are doing great work in the disability arena. All of my co-workers are parents of children with disabilities and some have disabilities themselves. I am completely immersed in the disability field and yet why do I still feel so damn inadequate regarding my son and his special needs? Why do I allow his setbacks to nearly break me in two?

Tomorrow, I am conducting a presentation on the program I am directing. The audience will be filled with parents of children with disabilities. I spent most of today working on my power point presentation, researching data and figuring out what I would say and how I would say it. I was starting to feel a bit inadequate as a professional and then we had tonight’s “incident” with Thomas. I realized that sometimes I feel inadequate as a parent, as well. Tonight was a bit of a set back for Thomas because he has been doing so much better.  As I sit and reflect on the day I realize that the best thing I can do during my presentation is be a parent FIRST, and a professional second. I am just like every person that will be in the audience tomorrow. As parents of children with special needs, we have days when we second guess ourselves. We have days when we feel that we just cannot take anymore. We have days that take us to our knees. We also have days when our children make tiny accomplishments and we relish in the glory. We grab onto those tiny accomplishments and let them warm our souls, re-energize our depleted bodies and refresh our exhausted minds. So, tomorrow I will wake up and be a parent to Thomas and Leah. I’ll get them fed and dressed for school and then I’ll head off to work for my presentation. I will try to remember that I am a professional with 21 years of experience in the disability and special needs field but, I will also remember that I am a mom FIRST.