I receive letters a lot from other moms who are going through what I have been through – and am still going through. Diagnosis, confusion, questioning, school issues – you name it.
But I got one this last week that surprised me.
Remember the Oprah thing? You know, how Oprah had a boy on her show with a mental illness, and because of the way the show was taped/cut it made it seem like this child’s behavior – aggressive, dangerous, and out of control – was all due to Sensory Processing Disorder?
Yeah, that one.
There were so many responses from parents who were terrified that their child’s SPD was going to turn into – that.
But the letter I received was a little different. Here is what it said,
“To be honest when I saw the recent show on Oprah, I was excited about it. I could see my child in the little boy on the show, especially her rages and thought this is so great! Finally I can show my family and friends what SPD is. Then the next day on blogs and forums I started reading about how upset people were about the miss representation of SPD and that the boy clearly had other things going on. This has lead me to be confused when it comes to my child.”
That threw me for a loop.
Why? Because what about families like mine? Those who had a diagnosis of SPD, but clearly there was more going on. What about them?
I am concerned that there are people who need to keep seeking help for their children – even after a diagnosis of Sensory Processing Disorder. And for that reason, I am reprinting my letter back to her.
Her question, “I have read/heard you talk about your son Gabriel, and how his first diagnosis was SPD. And that he later received other diagnosis as well. When you describe him, I recognize lots of the same traits in my child (4 1/2 years old). My Question is; when did you get the other diagnosis or how did you know it wasn’t “just” SPD?”
My response ........
The question you are asking is really a challenging one – because in a linear progression, at the time of my son’s diagnosis of SPD, I believed that SPD was it. Now, in retrospect, I can easily tease out which behaviors were SPD and which ones were obviously something else.
Let me say this: that is common. You get one piece of the ‘puzzle’ and then the next – and the next – and the next – until you know which behaviors/characterizes belong to which label. Once you understand each ‘piece’ of the puzzle, then the picture is clearer. So today, I am clear why each of my son’s challenges exist – I know which ‘label’ they go under and I know what to do about them. Obviously it isn’t that simple in practice, but my UNDERSTANDING is there, which leads me to make better decisions, make sense? So, if you are still missing ‘pieces’ then keep looking!
Here is how it started for us: We worked with a psychologist, who suggested the SPD evaluation, but also said that our son had Generalized Anxiety, and possible ODD/OCD. Those things – anxiety and obsessive compulsive behaviors – aren’t uncommon for kids with Sensory Processing Disorder. Since their body/feelings are so unpredictable, many kids with standalone SPD experience those issues. So, after having my son evaluated and diagnosed with SPD at age 4 (almost 5), we accepted that SPD was ‘the’ answer.
He had been successful at preschool, with us having him in multiple private schools – including a year at a Montessori – but Kindergarten was an entirely different story. 25+ kids, one teacher, and lots of rules to follow (don’t touch that, sit here, don’t move, blah blah blah) and we began to question what was going on.
At home, he was having severe meltdowns – what I now know were rages. But, I didn’t suspect anything else besides anxiety and SPD. We didn’t see other doctors, and we plugged away at OT and Speech.
What I did see was that he and I were both getting better at meeting his sensory needs. But he was still having problems - and major angry meltdowns/rages.
He wasn’t getting angry over clothing, or loud rooms, he wasn’t having motor planning issues, but he was STILL raging uncontrollably – destroying everything in his path daily. We had to remove everything from his room – down to only a mattress (taking the door off the hinges). At this point, I started talking to more people who had children on the spectrum, and we decided that Gabriel’s language and social issues were probably to blame on Autism. But still were unsure what caused the raging.
I made an appointment for Gabriel when he was 6 to see a well know Pediatric Neurologist and we waited nearly 12 months to see him. When Gabe was 7 we went to see the neurologist. I told him all of our concerns about language, play skills and social. He agreed they were autism, and we had an evaluation to confirm, and landed on PDD-NOS. Not as severe as 'regressive' autism, and not as mild as Aspergers.
Then we talked about the other part – the rages, irritability, consistent bad mood, aggressive behavior, depression, self-hate and more. I told him about my son’s self-injurious behavior (at the time it was mainly biting himself) and how he was, at times, physically and verbally aggressive with everyone in our house. I said things like, “He bites his walls, but maybe that is a sensory thing – he likes input in his mouth.” The doctor didn’t think it was sensory – or let me say this – he didn't think it was only sensory.
My son’s ‘mood’ was predictable at this point (predictably bad) – with him having severe and worsening rages and aggression every winter and leading into spring. They had worsened every year since he was 4 – getting longer and more intense, plus starting earlier.
The neurologist, just as quickly as he knew it was autism, threw out that my son had Bipolar Disorder as well. That scared us. We left there with a diagnosis of “Mood Disorder NOS” because Gabriel had not experienced a mania/second yearly cycle at that point (diagnostic criteria) and the relief that someone FINALLY told us what was going on with our son and even more importantly – how to help him.
Sensory was the first piece – and the piece that we had the most control over – but autism and bipolar are the pieces that we have to wrestle with every day.
Today Gabriel’s diagnoses are Pediatric Bipolar Disorder I (A-Typical because it presented at such a young age), PDD-NOS, SPD, multiple learning disabilities (the tri-fecta of dys's - Dysgraphia, Dyscalculia, Dyslexia) and more. He has documented cycling (something as a mom I have learned the ins and outs of!), and our family is at its mercy – but with the help of psychiatrists – we are managing. Some days well, other days, not so much.
I don’t know if your child has any other diagnosis coming – any other challenges, delays or skill deficits. What I do know is that you should trust your instincts. If you think something else is going on with her/him – KEEP SEARCHING.
When you get the right answer – you may not like it – but you’ll know it is right.
What was on Oprah is NOT just SPD. Period. It is indicative of a child who has multiple challenges. That boy, Zach, has Tourette’s Syndrome, Mood Disorder NOS, as well as SPD. Just like my son – a neurological issue, a mental illness and SPD. If your child displays violent behavior – towards herself or others – that is a good enough reason to keep looking for answers.
I hope this information is helpful to some of you - that it reaches whomever can benefit from it.
And please, all of you, don't forget to take care of yourself! <3