Q: What’s causing the challenges you face?
A: Helen has (we think) Sensory Processing Disorder. SPD is a neurological disorder that causes a “traffic jam” in the brain. Signals are taken in, but processed incorrectly.
Want more details? Here goes…
Information is taken in through our senses. The five you learn about in school (see, hear, taste, touch, smell), as well as our muscle control, sense of balance and space and internal organs. For Helen, all areas are severely impacted. This makes anything from coordinating movement or feeling hunger to understanding conversation difficult.
Q: Is she Autistic, then?
A: Even the therapists and doctor who’ve worked most closely with Helen can’t agree. Right now, she most fits the description of SPD.
Q: Can you fix / cure this?
A: Yes and no. There is no cure and she won’t outgrow it. This will always be something that impacts her life. However, therapy (especially early and intensive) can help. Based on Helen’s progress, we hope for an independent adult life.
Q: How does therapy help?
A: For us, there are two goals:
1.Develop functional life skills
2.Form strong neuro pathways for continued development.
It works like this: As babies develop, pathways are formed in the brain. These become stronger and more pronounced, allowing for more complicated growth. First, babies grab food with chubby fingers. Then they grasp a spoon. Eventually, they use the spoon to eat and the act becomes effortless. That “pathway” was formed and the skill developed. For most of us, this happens without intervention. For Helen, that’s not the case. We use all kinds of therapy exercises to form these pathways that her brain can’t form by itself.
Q: Are all these therapies/interventions really necessary?
A: Unfortunately, yes. Without ongoing support, Helen would never develop basic, necessary skills for everyday living. If we stopped now, she would likely lose some or all of what she’s accomplished.
Q: What does this have to do with behavior?
A: Imagine this: You’re at a packed concert. It’s great, but way too warm because you’re wearing a wool turtleneck. And there are these crazy strobe lights. Plus, you can’t take a break and someone else gets to tell you when to leave. How long could you stay calm and pleasant?
That can be the whole world for Helen. Her neurological system is constantly pushed to the limit, causing confusion and even pain. Plus, she’s only 4. Sometimes, too much is just too much. For all of us.
Q: Should I talk to her, then?
A: Yes, please! The thing that we need is a little space. If people stand too close or try to touch Helen, it can be frightening and overwhelming. But a hello is just fine.
Q: But she seems fine to me…is she?
A: No. She seems fine for two reasons. The first is that we have become very good at anticipating Helen’s limits. Either we avoid the situation or keep an eye on the nearest exit. That’s why you rarely see anything “wrong”. The second is that SPD changes day by day (and sometimes moment by moment). Like a house with faulty wiring, you never know exactly what will trigger all the lights to go out.
Q: How can I help?
A: We need friends who can offer a lot of patience and understanding. Taking care of Helen is like having to master some crazed Chess game while blindfolded. I’m supposed to anticipate her next move, but haven’t the slightest idea what it might be. So, if I cut you off mid-conversation, turn down another offer for dinner / coffee / playdate or never return your email, please know it’s not personal. We’re just overwhelmed and our kids need us right now.
If you want more specific ways to help, please ask. It may take a bit to get an answer back to you, but we will. And please know, if the answer is more than you can handle, it’s ok to say no! We get it.
Q: I read this article that I think can help. Should I tell you about it?
A: We really, really appreciate people who are interested in our family and want to help. But sometimes advice seems like one more example of what we’re doing wrong and trying to have an intelligent conversation while keeping an eye on Helen is next to impossible. If you come across something you think might be helpful, could you tell us about it in an email? That way, we can read it when things are calm.