Tips For Newly Diagnosed Families With SPD

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 noticable 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.

http://health.groups.yahoo.com/group/sid_dsi/ This is an international group where you will find people from all over the globe.

http://health.groups.yahoo.com/group/SensoryStreet/ This group, originally based out of the Bay Area in CA, has hundreds of families supporting each other. A great find!

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.

Enjoy the pic--the sand says "Mazatlan 2010" and the boys are yelling "Mexico!" In retrospect, they probably shouldn't be saying a word that ended in "O".
H

9 comments:

Carrie Wilson Link said...

Thank you for this! I'm going to share it with my peeps!

Dia por Dia said...

What a timely post! I was just talking about you to a mom at the park today. I will send her over here to check this out for herself!

I hope things have settled down after the recent weeks you have just had!

Best,
Dia

Caitlin Wray said...

Very comprehensive and thoughtful list - not just for newbies either, I suspect we all need reminding of these points from time to time!

Chynna said...

Great list, my friend.

I'll link to it from my Not Just Spirited page!!!

TTFN

Chynna xo
www.lilywolfwords.ca
www.lilywolfwords.blogspot.com
www.goingforfeingold.wordpress.com

Hartley said...

Carrie: I LOVE that you have "peeps"! :) Glad you find it helpful, and happy to hear you will share it!

Dia: I am blushing to think that you are talking about me to anyone! :) I hope this can help your friend--that really is the reason I began this blog: helping families. Thank you! Oh, and nothing ever settles down here. LOL But one can hope, right?

Caitlin: You are absolutely right that these are important reminders for everyone! When things get crazy here, this is the list I go back to. Did I slack off on Sensory Diet? Did we get too flexible with the routine? Reigning in whatever parts got too loose makes things better faster.

Chynna: Thanks! Link away girl, link away.

Our Family's Spot said...

Thanks for commenting on my site . . . and bringing me to yours! =0)

Your post is sooooooo true, and helpful. Isaiah has been in ST and OT for a year and a half, and while there have been improvements, the therapists aren't trained for little ones like ours. I have already started sending e-mails and making phone calls to get Isaiah into the right programs.

Thanks for your help and encouragement!

Blessings,
Kelly

Brandi said...

Thanks so much for stopping by and commenting on my site. We are trying hard to get Savanna's "official" diagnosis, but so far we have an IEP for severe speech impedement (much better after 2 years of speech!), but we all know there is more to it than just speech. The hardest part for me is remembering the doctors aren't just gonna help, I have to DEMAND the help. Which sucks and is draining. I will be following your blog now and am so glad to have "met" you.

Arianne said...

My journey for life on planet earth where women knew my pain has been found! I am a pseudo-mom, my sister was diagnosed at 37 with aspergers, my mom died ten yr ago. I've played coach, counselor, friend, sister, etc to her my entire life. She finally lives on her own but it's crazy hard to get the calls on her meltdowns. I can't belive people know that when I say meltdown it's not just a bad day. Thank you for this site, my day just got brighter

Nancy Peske said...

This is SUCH great advice. I know it's incredibly disorienting in the beginning--you're still reeling from the diagnosis, you're feeling upset and confused, you're not sure what your priorities should be, and there seems to be so much to learn. This is a great To Do list for any parent of a kid just diagnosed with SPD!