This is a Checklist for families parenting a child that is newly diagnosed with SPD (or still flailing about!). It hope it empowers you to manage your child’s Sensory Processing Disorder instead of feeling like it is running the show.
1. Find a qualified, trained, experienced Occupational Therapist.
You may think you already have this step down, especially since your child was probably diagnosed by an OT. But, and this is a HUGE but, you truly need to find an Occupational Therapist that has not only been trained in sensory integration techniques, but one that is currently treating patients with SPD successfully.
There are many things that OTs continue to learn, and having an OT that is focused on sensory integration is key to your child’s ability to get the most out of OT now and in the future.
Did that scare you? That you might go back and forth – to and from OT? A great OT is there for you and your child as your child grows up (shocking to think your preschooler or Kindergartner will ever “grow up” but as it turns out, they will). You may find you go back to OT for many reasons; maybe you need a little help with something specific—like handwriting or social issues. A great OT that knows your child and family will be priceless for the rest of your child’s SPD journey.
2. Establish a Routine immediately if not sooner.
Routine is going to be your new BFF. Making things predictable at home for you and your kid will reduce meltdowns. Plain and simple: Less Meltdowns = More Calm. More Calm = Happier people. That’s the way it works, I don’t make the rules, I just follow them.
Routine means you need do the same thing, every day, at the same time. Don’t freak out. You can do this. It sounds like you are sacrificing a lot, and you are sacrificing the by-the-seat-of-your-pants style of living and parenting you may be used to. But it is time to be more organized – no running to the grocery store after you pick your kiddo up from school. No staying out late at a friend’s house when you KNOW your kid can’t handle it. This is about creating a schedule within the limits of your family. Those limits will get wider as your child gets older, but until then, let’s take your child’s world from being THIS BIG
and bring it down to a more manageable this big.
Now, whatever you choose to do for your base routine each day (you need before school, after school and bedtime routines at a minimum in my experience) support your routine with visuals for your kiddo. This is especially important for young kids that cannot read, but valuable for all kids. Post routine schedules for everyone to see – including your spouse! My hubby wasn’t exactly thrilled with my new routine and schedule based living, but when he realized that I felt calmer (knowing there would be less meltdowns reduces myanxiety) and our kiddos felt calmer, he got aboard the Train. Chugga Chugga Woo Woo!
3. Establish your Sensory Diet immediately if not sooner.
Your Occupational Therapist will be your best resource for this to begin with. He/she knows your child’s sensory needs the best and can give you the right tools to use at the right time (we aren’t talking wrenches here, but info, ideas and activities).
This sounds daunting, I realize that. But, when your routine is in place, you will notice patterns of behavior: Every time my kid comes home from school he is overwhelmed and needs quiet chill out time, so I give him alone play time or TV with a heavy blanket (the proprioception helps my kid from getting *too* low); however, when he was in Kindergarten he came home WIRED and high high high, so we put him in a weighted compression vest for 20 minutes every hour until bed. Did wonders. Each kid is different—but they all have patterns.
Once you identify the patterns (journaling their behavior is an easy way to figure it out), share this with your OT and ask for ways to control your child’s “engine”. Once you establish the basics, you will be able to mix up what to do with your child and his/her “Sensory Diet” vocabulary will expand. You will also learn to be creative; a true Master of the Sensory Diet.
4. Find a Support Group.
Finding other parents that get what you are going through is necessary; note I didn’t say “optional” or “a good idea”.
This is crucial to your emotional health as a parent. Being the parent of a special needs child (Yes, SPD counts as “special needs”) means you are going to have a few extra bumps in the road. Establishing a support group early on is essential. And it isn’t just for you to vent, cry or otherwise find emotional support (although you will do those), it is also so that you have resources for tips on everything from school to travel to eating. The members of your group will become your best asset!
Here are some great places to start:
– This is an amazing asset for all people, parents and caregivers of sensational children. A true social network of people dedicated to Sensory Processing Disorder. A must for any parent with an SPD kiddo. Don’t forget to make “friends” with the founder Carrie Fannin while you’re there!
– They have a great national program of Parent Connection hosts that provide in person support in major cities (and some minor ones too!) all over the US. Nothing beats in person support. Nothing.
5. Take care of yourself/Find Respite.
This is an over-used cliche: Take time for yourself. One would think that finding respite should be intuitive–right? We all get that we need some time alone, time away and time to be an adult with other adults. But, as the parent of a special needs kid, there seems to be an endless number of things we have to do for someone else, namely our kid(s), and we leave ourselves last.
Having time to recharge is something that many women think is a luxury–not a right. You cannot take care of someone else until you take care of yourself. As I tell my children, this is NOT a point of opinion but rather a point of fact. No need to argue facts, just accept them (they argue anyway).
Once you accept that you do need respite and you deserve respite you are nearly there! To start with, respite can be just allowing yourself a shower, preferably alone, every day. Or maybe it means you spend the extra hour after the kids are asleep doing your nails instead of doing the laundry.
Finding time for yourself really does make you a “whole” person. You deserve that, and so does your sensational kid.
6. Strengthen Your Marriage.
No matter how much you understand intellectually about the difficulties of raising a special needs kid, you can’t rationalize away the problems that come with it emotionally–for both of you.
Take the time for your marriage. This means talk to your husband, go to counseling BEFORE there are major issues, have dates, talk to each other about each other (and not just the kids for pete’s sake!) and spend time being a couple.
Please don’t tell me you don’t have time for those things or that you don’t need them. Strengthening your marriage is NEVER a bad thing–it isn’t like people say “Damn, my marriage so so strong I totally wasted my time and energy working on it!” Am I right or am I right?
When you have those things in place life will seem much easier. Not simple, not spur-of-the-moment-wine-tastings-with-friends-fun, but manageable. : )
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