Even MORE ways you know you have an SPD kiddo…

1. You have a collection of twisty straws that should be sold to a toy museum (even though they still have applesauce stuck in them)

2. You still buy Velcro shoes for your 8 year old because he has to continually tighten his shoes all day and doesn’t have the small motor skills to tie them

3. You go through a new toothbrush every week not because they are being used to brush teeth, but because they are used as a chew toy (instead of the real chew toys you have spent hundreds on!)

4. You know that OT doesn’t mean Over Time

5. You have lists of new therapies you want to try, but no extra time, energy or money to actually do them

6. You know what a “no thank you bite” is

7. You are constantly reminding your kid through gritted teeth at the grocery store to “keep your hands in your pockets!" but he still touches everything

8. You have researched every school within driving distance of your home (and some too far away to realistically be considered) in an attempt to avoid having to shove your “square peg” kid into the “round hole” of public schooling

9. You’ve considered homeschooling – and maybe even attempted it

10. You are an expert at finding seams in clothing

11. Your child refuses to wear a coat – even though it is below freezing outside -- but you are OK with it

12. You have attempted to explain the definition of proprioception to at least ten family members, all of which still don’t get it

13. Your child doesn’t eat sitting down; no, he has to stand, dance, jump, spin and bounce during dinner – and you’ve learned to live with it!

14. You have long since thrown out the darling dresses and adorable bows you once thought your daughter would wear, since she’ll only wear sweatpants

15. You spend your spare time looking up things like CAPD and NVLD

16. You know what CAPD and NVLD stand for

17. When you tell your child it is time to “brush” you aren’t talking about his teeth

18. Bath time is a war zone – either your kid is attempting to become one with the water or refuses to get wet all together

19. You talk about “engines” all day long but know nothing about cars

20. If you could just convince your kindergartner to ASK the other kids not to sit too close, you would stop getting calls from his teacher about him pushing, hitting and kicking

21. You are tired of explaining that your child does not have “behavior issues”, but rather sensory issues that affect his behavior

22. You know, unlike most of those “helpful” strangers that give you unsolicited advice, that if you child could do better, he would

23. You have joined SensoryPlanet.com and finally realize you are NOT alone

24. You follow Dr. Lucy Jane Miller’s DSM updates with greater interest than current affairs, movie releases or fashion trends

25. You STILL haven’t had any time alone

26. You spent more time planning for your child’s 504 meeting (because they don’t qualify for IEP with just SPD), than you did your own wedding

27. You aren’t on Facebook to connect with lost high school friends as you originally intended

28. You wouldn’t tell anyone this, but your 6 year old (or 7, or 8, or …) still sucks a pacifier or his thumb at night to go to sleep

29. You have an ear-marked copy of The Out-of-Sync Child on your nightstand at the ready for late-night epiphanies

30. You dread taking your child to the dentist more than paying your taxes

31. You know that Sensory Diet has nothing to do with eating and is probably the most important ‘diet’ you'll ever do

32. You can name 100 things your child can do for heavy work at school, but are surprised that the teacher can’t remember even one

33. Unlike other kids, your child actually acts better when he has a fever

34. You used to browse the newest bags at Coach.com but now you spend more time “dreaming” over the latest from Southpawenterprises.com

35. You have still yet to come up with a quick response as to what is going on with your child

36. You have quit your job to stay home and take care of your child’s ever-increasing needs (and appointments) even though you can't afford to

37. Your insurance co-pays are more per month than your property taxes

38. You are no longer surprised when your child greets someone by crashing into them full force

39. You hear other women talk about the next Twilight movie, but you are just hoping for a
sequel to Autistic Like: Graham’s Story

40. You beam with pride when your child asks to be squeezed or chooses to swing without being told

14 comments:

Sasha said...

Can you give me a little info on this? 26. You spent more time planning for your child’s 504 meeting (because they don’t qualify for IEP with just SPD), than you did your own wedding.

DS is having a difficult time in K, but we are lucky enough to have a friend as his teacher who is willing ot make modifications to help (special cushion for his seat, sending him out of the room for errrands when he is having trouble, using a fidget etc). I am worried that next year's teacher may not be as accomodating. A friend mentioned we might need to get an IEP in place, but reading #26, am I understanding he wouldn't qualify w/ just SPD?

Appreciate any advice you can give me. Currently we are using a private OT.

Hartley said...

I am going to email you privately!

Hartley

Heather B said...

41. You understand the meaning of having weights in the blankets.

42. You have swings hanging in your basement that aren't for leisure.

Thanks for writing these:) Many made me smile - because I'm not alone.

Heather

GB's Mom said...

Great list! I didn't know SPD occurred all by itself! All of my SPD kids have also had other challenges and all have an IEP.

Patty O. said...

AMEN! I spent the entire time I read this post smiling and nodding my head in agreement. I especially like the one where you drool and dream over southpaw catalogs instead of clothing catalogs. That is sooo true!

Through Thick and Thin said...

Just wanted to say hello and I was very excited to have found your blog. I have a BP son, age 10 with a rule out of PDD NOS. While he has not been diagnosed as having SPD, I know this list all too well. Nearly all of them apply to us. I really look forward to reading more about your life journey.
Debbie

Caitlin Wray said...

OMG Hartley, I crossed off SO MANY of those 40 things it makes my head spin!!! It's so important to keep our sense of humour amidst all this chaos :) Thanks for the smiles!

Caitlin
www.welcome-to-normal.com

stanw said...

Wait - all of the above is associated with Sensory Processing Disorder??

I ask with such surprise because your observations and comments *so* apply to my work (I'm a para in a sp.ed collaborative), and I'm STILL so very confused by a lot of the "stuff" that seems just so "everyday" to all the other staff (and I'm not talking just seasoned therapists of OT, PT, Speech, et cetera).

Oh - I came upon this site through a "google alert" for Nonverbal Learning Disability I'd created because that happens to be *my* Achiles heel. I have a theory that it may be the result of pediatric hydrocephalus and the numerous surgeries I had as a kid to deal with it (I have ponytail-long hair for having learned really early that I HATE wiffles and/or "bubba" short hair).

So, NVLD, and OCD as well, have been my issues my whole life.

Anyway, your post seems to encompass practically EVERYTHING about my job I find confusing. I've been some sort of para (and summer camp counselor) as well as a private piano teacher, for some 14 years or so. I've only been working with the "severe" population for going on my 3rd year at my current (and lifelong if I can help it) position and school. I am very familiar with most things "spectrum"ish, as my last job was a 1:1 para for a beautiful boy (ha! He's 18 now, so I guess I should say 'man' - wow, tick tock!) who has either HF Autism or Asperger's, depending on what the experts have decided on any given IEP (ISP - wow, adult!) year.

What *IS* proprioception anyway?? I get the whole "knowing where you are in space" thing as it pertains to gravitational insecurity and what not. I even smiled with recognition (and a little love) at some of the behavioral cliches of the population I work with. I say "behavioral" only to indicate what of these wonderfully open and fragile and needy and loving kids is *observable* through the senses - not as a euphamism for "naughtiness" (how arrogant is that, anyway!!).

Okay, I've rambled for long enough. I'm so sorry it's terribly disorganized. This is written from my "verbal diarrhea" stage or writing - and I'm not going to tweak it to the polished level of most of my other writing - which is a marked strength for me.

Just wanted to "speak" with you because, well, the opportunity to do my job better almost never jumps out at me with such a bow wrapped around it! Thanks for any response. :)

-stan shura

Hartley said...

Heather: Those are great!

GB: Yes! The SPD Foundation has been working their tails off to get SPD recognized as a stand alone diagnosis. BIG for SPD kiddos all around the world. :)

Patty: Glad you got a smile -- don't you love southpaw? LOL

Through Thick and Thin: Welcome! Sounds like we have a lot in common--I look forward to learning more about your family!

Caitlin: Glad you can relate. :) If I didn't have my sense of humor I'd be committed. Really!

Stanw: Hi Stan--glad to see a paraeducator intersted in learning more! Yes, all of those things are related to SPD. Proprioception is located in your joints and muscles and gives you the sensation of pressure--both pushing and pulling. How hard you hug someone, how hard you push on a pencil, what it takes to throw a ball, pull a wagon, and more. Lots of children need MORE propriocpetion (squeezing, joint compressions, heavy work, heavy blanket, weighted vest, etc) to keep their body feeling calm and organized. Read some of my older posts, I think you'll find a lot of information!

Hartley

Megan said...

Yes, Caroline has mood swings with both fall and spring. Right now we are dealing with mania and upping her Lamictal to control it. If not, we may have to increase Seroquel, not my druthers. Summer is a good time for her through September. I think she should do school through that time, and take a break from Oct-Nov, and then from Jan-Feb. Those are times that she has been frequently hospitalized.

Jennifer said...

I definitely relate to this list!

laurata said...

So am I going to cry my eyes out if I watch Autistic Like: Graham’s Story? Have you seen Phoebe in Wonderland?

Hartley said...

laurata: Yes, you will cry, not from sadness, but because you will relate on a level that is so deep that it will move you. Erik Linthorst did an amazing job! His wife Jennie is going to be featured on my blog's FTG article series for April 1st. Until then, check out the DVD!

Hartley

Erik Linthorst said...

Great list...I laughed out loud. So true! And I especially like #39... and ps - I'm working on it ;)
Erik