How Did You Know It Wasn't 'Just' SPD?

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 this letter 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.

What about families like mine – 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, we accepted that SPD was ‘the’ answer.

He had been successful at preschool, with us having him in private preschool – 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.

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 a child 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 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 PDD-NOS.

Then we talked about the other part – the rages, irritability, consistent bad mood, and more. I told him about my son’s self-injurious behavior (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 I 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 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 really 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, PDD-NOS, SPD 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 – 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. What I do know is that you should trust your instincts. If you think something else is going on with her – 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.

Don't forget to take care of yourself!
H

12 comments:

Caitlin Wray said...

This is an important post Hartley, especially for people who's search for those missing pieces may be inhibited by fear. Fear of the unknown label, the 'worst case scenrio', fear of what is REALLY going on with their child.

I started out with only one goal: to help my son. I believe all parents start from this premise, but some can get sidetracked by fear, and THAT becomes a dangerous situation. The moment we let ourselves stop seeking the truth for our children, because we are afraid of what that truth might be/how it will look to others/what it will mean for the future, etc. - the moment we put those fears above our desire to help our kids, we have failed them.

I am so happy that this woman is going further to figure out whether it is more than SPD for her child. And this highlights yet another danger in the way Oprah characterized SPD - parents out there may have kids with deeper needs that will not be uncovered or met, because they will settle on the SPD label when it may not be sufficient.

I have a very close friend who's daughter clearly has much more significant psychiatric issues than the "anxiet" label she's been given - but she's been given that label because my friend refuses to share all the "ugly" details about what daily life is really like with her daughter. She is afraid of what they might tell her is REALLY going on with her child.

And that fear is keeping her daughter from getting the services and supports she needs at an early age. The irony of course, is that what my friend really SHOULD be afraid of, is what this lack of early services may mean for her daughter's future development.

Caitlin
www.welcome-to-normal.com

Mom2Kaia said...

I've gotta agree with Caitlin. Kudos on this post Hartley!

For my part, I was also there. A few months back, I even wrote to Hartley with the same question... "I feel like my daughter has more than SPD. What should I do?"

Hartley encouraged me then to keep searching and very wisely reminded me that if I didn't find a label for what was troubling my daughter, someone else will. And the labels she'd get from others would be things like "trouble-maker," "bad apple," etc.

We found out a few weeks ago that in addition to SPD, my daughter has a communication disorder known as mixed expressive receptive language disorder (MERLD). Armed with that information, I can now get my daughter the treatment she needs and help her to have a chance at a better life.

Thank you again, Hartely. You're a hero to all of us.
Karla
http://helloworlditskaia.blogspot.com/

Trish said...

My son, who has autism and sensory issues, had a horrible time last spring for several weeks and is having trouble again this year for two weeks so far. We are seeing the psychiatrist today and wondering if it is due to anxiety, seasonal allergies, bipolar hasn't been mentioned yet but I guess could come up after reading this post.

Thanks for sharing this. I need to do some more reading before this afternoon, I can see.

trydefyinggravity said...

Great post Hartley, and so important. For us, SPD was the first diagnosis as well, but as soon as our son started school we knew there was something more. I hope that this mother continues to trust her instincts to press for whatever information she needs to help her child. You've given her great tools.
Alysia

In Real Life said...

Thank you for writing your blog, this is a really great, informative post.

Hartley said...

Thank you ladies for all of the comments - I truly believe it is imperative to our children's development (and often our sanity as parents) to keep searching until you have the answers. I have my answers - and truthfully, I don't like them all. But, without them, our family and mostly my son, would still be lost...searching...without anyone to lead us.

Thank you all for your support!!
Hartley :)

Patty O. said...

This post is great and, as the others pointed out, so important. We had a similar journey. Danny was diagnosed with SPD when he was 2, but then when he was 6, high functioning autism was added to the list. I think we had to get through the major sensory problems first and deal with that; then we were able to tease out what else was going on.

The good news is (in my opinion) that OT for SPD will help in so many ways, so even if there are other underlying issues, getting your kid therapy for SPD will be so helpful. Plus, perhaps the OT will have an idea what else might be going on.

Ellie said...

Just wondering...what is it about spring that brings about these increases in issues? We've noticed them here too, both in my daughter's anxiety/depression and my son's behavior challenges. Any ideas?

Hartley said...

Ellie,

If we could pin point what it was about spring that puts all of our kiddos on crazy mode we'd be rich! LOL

It is a phenomenon that has been around and documented for generations. Some guess the weather, the time change, the longer days/sunlight hours, allergies kicking in, 'spring fever' in the air, summer coming, change in routine - whatever the cause - it makes things harder for sure!

My son experiences a Depressed state during this time - which is uncommon - the more common is a mania state for kids with BP. That said, he is swining daily - if not hourly - between depression and mania right now. So who knows! LOL

Hartley

spdmum said...

I'd like to add to the thanks for this post. It's always so helpful to hear and see how others are managing with similar confusions as we are and importantly that we're not alone. I rely on all of your wonderful stories and advice, not just from Hartley but all the blogs from the US and Canada that help us cope with what's going on in Becca's life. Not even neurologists or OT's can help us here in the UK, they just don't have the knowledge or experience and it is unfortunate. So keep posting, I don't know what we'd do without you all

Julie said...

This is a great post! We figured out the SPD at age 3.5. We always had a feeling that he would be ADHD as well, but with these two being so similar, I wasn't ready to go there at that point. Thanks to all teh reading that I did (incl. this blog!), we decided to try just the OT for SPD. Very quickly, he was much better able to deal with things sensory-wise that had previously thrown him into a meltdown. Two years later, he was still having rages and bounching off the wall behavior, even when we'd tried to fill him up on his sensory diet. He was in K and having problems making friends and paying attention to the teacher. That's when I knew we needed to see a psychologist. And, sure enough, he met all the criteria for ADHD. We're now trialing meds for that plus continuing the OT and we're having many more good days than we used to. So, to me, you know there's more going on when you've done the OT and the home sensory diet, they can cope with sensory things better, but they are still having a hard time with life.

The Teacher's Wife said...

I wonder why it is that so many children don't have "JUST" SPD- mine included! My son has SPD, Asperger's, and is highly gifted. What a combo! Sometimes I actually wish that my son JUST had one issue, but then he wouldn't be the creative intelligent sweetie that I know he is....