How Did You Know it Wasn't Just SPD?

This subject has come up a lot again, so I am reposting this from April for all of you who are now finding yourselves in this same position... <3


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


Chrisa said...

I also often tell parents that task that we cycled through SPD, PDD-NOS, Mood Disorder NOS, BP NOS, BP1, BP1 with psychotic features, Schizoaffective Disorder Bipolar Type, and now, at age 17, we are looking at straight schizophrenia.

The hard part is that all these symptoms overlap. Until your child is done developing, treat the symptoms. Don't worry about the diagnosis so much.

Hartley said...

Wow Chrisa - I often wonder if we are on the same path...scary to think. Thank you for commenting and sharing - it is so important for families and parents to know they are NOT ALONE!


Heather said...

Please email me! I have a question about your blog! :)

Summye said...

I just saw that you re-posted this and thought that I would comment. I am the one who wrote the original letter to Hartley prompting the original post in April. Hartley's letter back to me helped me and I hope this post helps others as well.
In April I knew that we would eventually have to keep looking to figure out what was going on, but emotionally at the time I just couldn't handle any more. What I did do was stop hyper-focusing on it and did something for myself. I joined a club and lost 25lbs,meet new friends, and changed my outlook.
In November my child's teacher, pediatrician, father and OT all expressed more concerns and we have once again started the diagnosis process again. We get the results next week, but I am OK with it now. By first taking care of me, I feel more equipped to deal with whatever comes our way.

Thanks for all your support Hartley!

Patty O. said...

Summye, I love your comment! Taking care of yourself is so important. My oldest son has SPD and autism and my daughter has SPD. Now my toddler is exhibiting troubling behaviors and my mom wants to know when I'm going to take him in. Right now, I just don't feel like I can handle it, so I'm taking a couple months. In the meantime, we are working with all of our kids, but I need to regroup before I can face another Dx. Thanks for the validation.

And maybe your advice will help me start taking care of my own health. Here's hoping....

Eliza said...

Wow, my son has the same DXs as yours. - even down to not typical bipolar, but the mood disorder because he has no mania and can sleep at night. As your other comment suggested, it is good to know other parents are not alone. But also, it is good for our kids to know THEY are not alone either. My son is filled with such self-loathing after a rage, it's heartbreaking. He insists that he's the only "bad kid" being mean to their mom. I wish there was a kids' blog--hey maybe we'll start one! Where kids with his issues can talk it out with others. Hmmm--got me thinking! Thanks!

Bonnie said...

Great article. I love reading your blog as I can relate to your story. I didn't find out what was going on with my son until he was 8 years old and some pretty traumatic episodes at school. He was dx'd first with ADHD which made his behavior worse. Then he did start having serious anxiety, and mostly in the form of separating. He does not transition well so his PPD-NOS more of a later onset that was more noticeable as he got older. We were then told Bipolar NOS but I never felt this was right. I also brought him to a peds nuerologist which did diagnosis him PPD-NOS and his new psychiatrist came to the same conclusion.

We have SPD, PPD-NOS, OCD, and GAD. I leave out the OCD often and just concentrate on the anxiety and SPD aspects. He has been on risperidal which has helped his anger issues. He no longer wants to hurt himself but he still picks at sores or cuts which makes them worse. He loves to pick at his chapped lips during winter. Luckily we don't have much a winter here in the deep south. Anxiety is his biggest battle and Zoloft has helped him tremendously. Sorry for rambling but I started my own to help advocate for Robbie and tell his story. I think the more we understand mental illness, the better we can understand individuals who live with it.

Anonymous said...

Reading this post and all the comments has left me a bit overwhelmed.

My husband and I adopted a beautiful baby girl from the foster system and from the beginning we knew that we would face struggles as she was born addicted to Cocaine, marijuana and barbiturates. Kailey has seen multiple therapists, doctors and now just recently a Functional neurologist. Each doctor has told us different things. We know that Kailey has SPD and we are seeing signs of ADHD but because she is 3.5 we have been told that there really isn't a test that we can take until she is 6. So we are investigating ADHD but now I am reading all these other acronyms and I am feeling a bit overwhelmed.

I have never heard of these names and I can see have have more to investigate. Where do I start?

Laura said...

Oh my goodness. Would it be terrible for me to say that I am very excited to read this post? I can't help it. I doubt you remember me, but I posted to a contest you had giving away your son's book. You sent me an email and we live close. My son is seven and has been diagnosed with severe anxiety and OCD. The psychiatrist says that he is too young to diagnose with schizophrenia, but he think it's probable. He says his reactions to his medications is "telling". This is a frighting and frustrating world and I often feel like there is nobody else out there who is going through the same kind of challenges I am. I don't know what made me decide to look at your blog today, but I am so glad I did.

Unknown said...

I am glad I came across this blog. I have been having major issues with my 10 year old daughter to point she is starting be really unsafe. I am going to be checking into getting her tested for more then the SPD because she is so angry to the point nothing is helping anymore.

Unknown said...

Great blog & awesome post. I have often wondered if my 5 year old has something, but I don't know what. She is currently in O.T. Initiallt brought in for fine motor skills & food issues, but discovered all that kinda fell into some sensory issues and I am wondering if it's SPD. I don't know where to start. My doctor says she is too young to diagnose & she believes she may grow out of it. I am not so sure myself. I think some things are progressively getting worse or perhaps more noticible. She had a hard time in Pre-K where her teacher openly said she thought it might be Autism but it wasn't. We tried to work with the district to no avail. She constantly got in trouble, got sent to the principal's office and came out crying from school feeling sorry for herself. I have cried so much and still do cause all I want is to
Help my little girl. I want to understand her & her world.