SPD Diagnosis -- Now What?

This is one of my most favorite posts, and I have noticed a new 'wave' of families that are joining my blog with newly diagnosed SPD kiddos (Welcome!  Look around, make yourself at home, and introduce yourself on comments!)-- so I thought this would be a GREAT time to repost it!

This is my Checklist for Families Newly Diagnosed with SPD (or still flailing about!). It is the basis of my therapy for Gabriel and what I rely on day to day to live. It makes me feel like I am empowered to manage his Sensory Processing Disorder instead of feeling like I am at its mercy all the time.

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 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 to 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.

We have been back and forth to the same amazing Occupational Therapist for over 4 years now. She has been my son’s OT, my personal therapist, my son’s social coach, his school advocate and now I consider her a personal friend.

2. Establish a Routine immediately if not sooner.

Routine is going to be your new BFF. I say all the time that routine is my dearest friend and is the one I miss the most when I don’t see her for too long. 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 my anxiety) 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.

For ideas on what you can do at home that your kiddo will truly LOVE read this post and for ideas on toys to have at home to aide you in helping your child get some input, check out this one.

4. Eliminate Food Dyes and HFCS.

This is just a fact for most kids I know: Fake dye, High Fructose Corn Syrup and all those chemical additives in food are just plain awful. I limit sugar intake as well, but I would rather see Gabriel eat a dozen homemade cookies then even one Oreo. And don't get me started on the birthday cakes from the grocery store! Who needs a two inch tower of red icing? Gross.

All kidding aside, we really are pumping our kids full of all of these chemicals, and in my opinion, our kids who are already "sensitive" can't handle it. Why stimulate their brain more? Check labels for hidden HFCS. I was shocked to find out that Graham crackers and Yogurt have HFCS. Ridiculous.

Yes, on some level this means I have to be the Food Nazi, but you know what, I am willing to do it. At this point in Gabriel's life, it doesn't surprise him when I walk over to him during a birthday party to scrape the frosting off his piece of cake, or insist that he only have a middle piece with no decoration. That is a treat--store bought cake. Did you know they put HFCS in that stuff?

I really believe that making the effort to eat healthier--more whole foods and lots of protein -- makes a noticeable difference in my kid. And, who knows, you might just lose some weight while your at it. : )

5. 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:

www.sensoryplanet.com – 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!

www.spdfoundation.net – 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.
6. 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.

I encourage you to find friends, neighbors, family or a plain old babysitter (try the special needs section of http://www.care.com/, we have had luck there) that can watch your kid(s) and let them do it. If you don't have the extra money for a babysitter, ask others for help. If that is hard for you, read this post I wrote on the challenge of asking for help and why we have to anyway!

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.

7. Strengthen Your Marriage.

If you would’ve asked me if my marriage was strong four years ago, I would’ve said yes. Why? Because I really thought that since my husband and I both were “aware” of how hard our life was and since I was sure that both of us understood that there was limited time (having three sons in 40 months is no easy task!) that it meant we were OK. Truth was, it didn't.

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.

The rate of divorce for parents with a child with Autism is like 83% and I can't imagine SPD parents are too far behind that stat. Our children need us--and arguably need stable parents more so than the average child.

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. : )

If you have anything to add, by all means please post your tips in the comments below.

H

Photo:  Gabriel and Midas (technically, the second Midas, but he can't remeber this lion's name, so we call him Midas too), practicing using mom's new iphone 4 -- gotta say, I like it.

8 comments:

Chynna said...

I always loved this post. Thanks for putting it up again. I'll send readers over this way to check it out. =)

Hope you're doin' okay.

Chynna
www.lilywolfwords.ca
www.the-gift-blog.com

Kris said...

This IS a great post. My son was diagnosed about 18 months ago and your advice is spot on.

Making Sense of the Senses said...

**I posted this on the "sid_dsi" Yahoo group*** Sorry for the cut/paste method, but I'm short on time** I am so glad I found your blog**

Hello,
I mentioned earlier that I am in the process of obtaining another O/T for my daughter which just turned 2 and was diagnosed with SPD. Honestly, I was the
first one to diagnose her after googling some of her "quirks". I then had to get a referral from her pediatrician for an O/T. I found the O/T myself online.
At the time this was the only O/T I found that seemed to know about SPD. However, she is not certified to administer the SIPT test. In doing research I discovered that the SIPT test is not meant to be administered on a then 21month
old, so I made an appt. to see this O/T. Three months into our sessions, I feel we are not a good match.
On our first appointment, the only thing she did to asses my daughter was ask her father and me a questionnaire about certain behaviors. During the sessions
I sit with the O/T while her assistant(s) "play"(do o/t stuff) with my daughter. We never have the same assistant, and my daughter hasn't taken to any of them. She has to get used to new assistants every session and they really can't get her to do much of anything on the sessions because she is always running back to
me for reassurance.

All this, just to ask of anyone out there that had a toddler diagnosed with SPD?
What sort of initial evaluation was done?

Thank you so much for all your help. This group is quickly beginning to be a
life line.

Sincerely
Ruth

Hartley said...

Hi Ruth,

I encourage you to post your questions on SensoryPlanet.com -- if you aren't a member there yet, join! They are a social network dedicated to SPD, and the woman who founded it, Carrie Fannin, is a FANTASTIC resource for families!

Thanks for commenting!
Hartley

Texjoyce said...

Hi Hartley,

Have you posted this post on the facebook page for SPD? Just curious. It might help people.

Thanks!

Hartley said...

Hi Joyce,

I haven't posted it on Facebook, but that is a good idea. You are welcome to post a link to it in their discussions!

Thanks for the idea!
Hartley

Joyce said...

Hi

Thanks so much for this post - it was a wonderful read at a very needed time. My little boy at 6 is showing signs of SPD and although we havent made a formal diagnosis, his OT agrees that he is very sensory seeking. In our first session with SPD as the focus, she made had him doing many activities, that on the way home he said to me "thank you for taking me to Amanda" - the very first time he really enjoyed any therapy session.

You have some fabulous info on your blog and I have saved it for later reading as my brain is a bit fried right now.

There was mention of a facebook group - is that your name or is there a separete group??

I had another question but it has slipped by, but many thanks for reposting.

Joyce

The Teacher's Wife said...

I'm SO glad you left a comment on my blog bc I LOVE your website!! Our son, 3 yrs old, has been evaluated as highly gifted (9 yr old level), but the beh. evaluator did not want to "label" him with anything till he got older and can diagnose him better. We have always suspected SPD movement issues although we forgot to ask the eval.- no fear, HUGE daredevil, social problems, ALWAYS hyper, needs a tornado strength force in playing, etc. Do you have any resources for overlapping issues like gifted/SPD? I am supposed to be writing a review on my blog but got so caught on your site! I will certainly be back! Feel free to message me @ survivingateacherssalary@gmail.com