I concluded my last post with a brief mention of the amazing young woman who changed not only Riley's life, but ours as well. This young woman, whom shall be called "Angel" was an occupational therapist who was well-versed in Sensory Processing Disorders.
After observing Riley for about twenty minutes during her day of showing our Developmental Therapist, she then sat down with me and not only spoke, but really listened. When we had gone through many of my "mom" observations, I asked her if she thought "this sensory stuff" fit. Her response? "I have seen this before and I can help you." My reaction? I broke down and cried. She was the first person who acknowledged and supported that there really was something going on with my little boy and that something could be done to help him.
As soon as these two amazing young women left, I contacted our case manager and asked if "Angel" could begin working with Riley as soon as possible. Things were put into place and she started working with us the following week.
During her first visit, Angel and Riley interacted while she removed and stacked all the pillows and cushions from the sofa. She lifted Riley up in the air (yes, I was freaking out) and pretty much dropped my tiny little 16 pound twenty-month old boy into the pile. I thought he would freak out, but he did exactly the opposite: he almost visibly breathed a sigh of relief. It as as though he had been holding in all the tension and stress of his needs not being met and someone finally flipped the release switch.
From a parenting standpoint, it quickly became apparent that we had been doing everything wrong for this child. This has long been the hardest thing for me to reconcile in my parenting book of checks and balances. We were doing everything right for nearly every other child, by our third kid, we should have half a clue, right? We did everything we knew how to do, but we were doing everything wrong for this child.
When we would gently caress him, it felt like spiders on his skin. When we would snuggle him, if he wanted to be touched at all, he nearly wanted to be manhandled so he could really feel what we were doing. He craved what we have since learned is sensory input: deep pressure, firm wrappings, swaddling, spinning, hanging upside down, swinging while wrapped in a blanket turned into kind of a hammock and more. In short, to help him, we needed to overstimulate his system so that it would level out. The term that made the most sense to me was that we were helping him get neurologically organized. In order to do this, we had to throw all the parenting rules out the window.
The difference in Riley was immediate. When he would begin having what we thought was a meltdown, we would overstimulate him and he would find emotional balance. When he was having difficulty eating, we would try some of the tricks and tactics we were learning from the feeding nurse, nutritionist and our Angel...and he would actually eat, almost voluntarily.
Within just a few days of Angel's first visit, I took Riley to see a new pediatric gastrointestinal (GI) specialist. My previous experiences with GI doctors had not been all that great, but this guy was supposed to be "the best". Our pediatrician referred us to him because at twenty months, Riley weighed sixteen pounds, just two pounds more than he had on his first birthday and less than 10 pounds more than he had weighed at birth. His total development had slowed down, his head growth had stopped and his lateral growth had pretty much flat lined as well. He was so tiny it was heartbreaking. I was holding out great hope for our newly placed team from Early Intervention, but I kept the appointment anyway...as a mother, I was desperate to help my little boy.
From the moment the doctor entered the room, my mommy gut was on high alert. This man started firing questions at me and cutting me off when I would attempt to answer. He started throwing very scary potential outcomes at me and then came up with an "action plan" that involved numerous highly invasive, not to mention expensive, tests, one of which that involved hospitalization for two days with a probe shoved down Riley's nose and the threat that if he did not cooperate by staying nearly completely still for the 48-hour period, he would have to be restrained. Let's get real here...all "stuff" aside, Riley was just shy of two years old. Tell me one toddler who will willingly stay still for 48 hours while confined to a hospital bed. Seriously?
I told the doctor that we had just started working with an OT and that she believed that working with his SPD issues stood to help his feeding issues. His response? "I don't put any stock in that "sensory stuff" but what I will tell you is that if you continue pushing off directly addressing his GI problems, you could do your son irreparable harm." I told him I just wanted to give the Early Intervention team sixty days. The doctor's implied threat was that if I waited sixty days, I would never forgive myself if he had permanent damage...or worse. I took a deep breath, made a follow-up appointment and left his office before the tears started.
Once in the car, I called my husband and told him that apparently, despite my best efforts, I truly did have BSM (Bad Mommy Syndrome) and that everything we had done to date had potentially caused irreparable damage. That by trying to help him, we were doing more harm. I then called our pediatrician and asked her how severe the consequences could or would be if I pushed off this battery of invasive tests for sixty days. She told me as a mother, she understood what I wanted to do, but as a doctor, she needed to advise me that this doctor was "one of the good guys" and it would be best to follow his advice. All that said, she said she did not believe waiting two months would create significant harm, but if anything changed, even a tiny bit, she wanted me to take the GI doctor's advice and move forward with scheduling the tests. I agreed and headed home with my fragile little 16 pound boy in tow.
We jumped in, feet first, and started working with our Early Intervention team. We implemented what Angel called a sensory diet and worked with Riley daily to address his various sensory processing challenges. Just a quick flashback, Riley weighed over 7 pounds when he was born. He weighed 14 pounds at twelve months. He weight 16 pounds (just a 2 pound gain) at twenty months when he started working with Angel. On his second birthday, he weighed TWENTY pounds! He gained a pound a month for the first four months after directly addressing his sensory processing difficulties. At that point, it was without a second thought that I canceled all follow-up appointments with the horrible doctor who all but accused me of child abuse for following my gut and my heart.
It was right around that time that I truly realized how absolutely critical it was to truly stand up for and advocate for my child. Not that I did not do that from the moment he was born, but I was quickly learning what the feeding nurse had told me during her first visit: that I am the expert on my child. I took that one step further and realized that helping Riley grow and develop had expanded beyond typical parenting, it had also become my job. I had to learn to fight for him because he could not fight for himself. Somewhere along the way, I also realized how far beyond the "normal" parenting book this had extended. We needed to relearn many of the parenting skills and approaches we had utilized with the other children. Raising Riley was a very different learning process in parenting than raising our first two children.
In the years since discovering not only Riley's Sensory Processing Disorder, but understanding how it affects and impacts nearly every part of his life on a daily basis, we have all learned and grown. Over the years, many people have said to us, "How do you do it?" My standard response is also the name of this blog, "As Opposed to What?" If I do not fight for him and learn to raise him and help him grow and develop according to his needs, who will? Yes, it's hard...sometimes it feels like it is too hard, but that's tough cookies for me. Helping him cannot possibly be harder for me than not having his needs met while waiting for us to figure out what is going on can possibly be for him. He is my son. Advocating for him is my job. Helping him learn and grow is what I committed to do when I accepted the responsibility of becoming his parent by the very nature of carrying him inside me for nine months. If I just said, "this is too hard...he's going to have to learn how to deal with things my way because I don't want to learn what he needs..." what kind of mother would that make me? Talk about BMS!
Riley is now 9 1/2. He is in a typical 3rd grade classroom and is thriving. He does well in school and most of his sensory processing challenges are controlled by a variety of strategies that have just become a part of his day to day life. He has friends and is just part of the class...not "that kid". When he was five, Riley was also diagnosed with high-functioning Autism. We also address the Autism and its related symptoms and challenges as part of the master plan in raising Riley, but in many ways it is secondary to his SPD. In the world of doctors and formalized diagnoses, the Autism diagnosis has made some of our fights with insurance carriers and managed care as SPD is not a true "medical" diagnosis. There are amazing individuals working on correcting this, advocating for individuals with Sensory Processing Disorders, and fighting the good fight to not only increase awareness, but also to provide for recognition of this disorder that affect 1:20 individuals.
This brings our story up to date. Obviously there is so much more that happens on a day to day basis...one of these days the finer details will work their way into a book. For now, this will hopefully suffice and help others gain a better understanding of SPD as they work through their own journeys or help friends and family members who have sensory difficulties or challenges that keep them from truly reaching their personal potential.
Please stay tuned...there are many more thoughts spinning around in this little head of mine.
Have an amazing day!
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