Sunday, October 26, 2014

How to know when to seek help for a sensory child

This blog spells it out really nicely.  They don't cover everything, but it's a nice overview.  I always want to go into too much detail because SPD is SO MANY THINGS and if your kid has it I want you to catch it sooner than later.  So just know that the blog doesn't cover everything.  If you suspect anything, research it more.  More links to follow.

Chances are you know someone with SPD, or maybe you have it yourself and don't know yet.  Since we have been getting help for Taiten, I have noticed so many of my own sensory issues and I'm working on them too.  You are never too old to get help.  Please read the blog I linked!

If you want more information, check out the SPD Foundation.

After I learned about SPD about a year ago, I printed off this checklist and filled it out for Taiten.  If you think you have a sensory kid, or know of one, check it out.  It's 14 pages long if you print it out.

I'd like to share more of how we decided to get Taiten into occupational therapy for SPD.  Here are a few questions I answer all the time.

Q. Why do you talk about this all the time?
A. Because it took me almost 5 years to get Taiten the help he needs.  If I can save one child and parent the hassle and heartache we went through it's worth it.  I also am not shy about telling my friends that their kids might need help.  I wish that someone had taken me aside when Taiten was 5 and told me what to do.  I don't even care if my friends get super angry with me for saying that their perfect angels might have a problem.  I'm that passionate about getting the word out and saving them what I went through.

Q.  I don't like to label my child and I'm worried this will stay with him forever.
A.  SPD isn't really like that.  The occupational therapist will never say that something is wrong with your child.  Nothing is wrong with them.  They just might need a different set of tools than you have to offer them.  But you can gain these tools through OT (occupational therapy).  Taiten has been going to OT for 6 months or so and because of it we have many more tools for him.  He used to yell for a half hour (on a good day) before he did his homework.  Now he complains that he has to do it, but then just does it (90% of the time).  SPD is not a "traveling label."  No one even needs to know anything about it.  It doesn't need to be reported to the school, no one needs to be aware of it.

I am so happy to know about SPD because before we learned about it we felt lost.  We knew there was a problem, but had no idea what to do about it.  Please seek help, the younger the child, the easier it is to make changes and get help.  Starting at 9 years old is harder.

Q.  What about your son made you look for help?
A.  The number one concern I had was his eating habits.  He never ate vegetables as a baby.  He spit them out every single time.  I still remember with perfect clarity the day he ate three peas with dinner, and that was 8 years ago when he was two.  It has never happened again.  He won't eat whole wheat bread if there are any seeds or nuts in it.  He won't eat cookies with nuts in them.  Or sauce with chunks.  He will go two days without eating anything if you tell him he has to eat a strawberry before he eats anything else.  He did that at three years old on the advice of a child psychologist.  When he was 5 he would eat 5 things.  Now at 10, he eats about 10 things.  Apples (without skins) and bananas (but only with peanut butter with no chunks) have been added as the only fruits he eats.

I could go on and on, but I think you get the idea here.  It's not reasonable for a ten year old to be so limited in what he eats.

Non food concerns:

He still walks on his toes.  Kids usually grow out of that before 9.

He has a hard time controlling outbursts, and they could be about anything.  Having to do a chore, plans suddenly changing, homework.  It's mostly when he has something planned out in his head, and then we change it on him that there is a problem.  Like, maybe he imagines coming home from school and playing computer games and we tell him he has to finish his homework first.  He would scream and yell for up to an hour before doing the homework.  One day it took him three hours to do the dishes because he would stop and scream for 10 minutes after doing about 5 dishes, and he repeated that for the entire time.

His large motor skills were behind other kids his age.  We thought he was just "non sporty," which is fine with us, but we noticed that he couldn't bounce a ball, or run as fast, couldn't do a sit up or a correct push up, and even if you aren't sporty, lots of people can do these things.  He was just behind his peers in most areas.  Through OT we found out that it is due to a lack of core strength.

This answer could be it's own blog post so I better end it here.  But please know that the list is so much longer than this.

Q. What is the diagnosing process like?
A.  What I went through to get a diagnosis, and what it should have looked like are very different things.  But here is how it typically should go.

(I hesitate to use the work diagnosis, because this is not a disease or something that is a forever condition.  In many cases, an SPD kid will do OT for a while and learn the tools they need and be fine for life and not need any additional treatment.)

Your doctor might notice that your kid is different than their peers and send a referral for OT.  (In a dream world in a dream universe.)  Then you go to OT and they ask lots of questions and observe the child.  They play games and have fun with them all the while gaining insights.  Then they will meet with you and discuss what they find.  They will give you recommendations for how often to come in and what to do at home.

OT is targeted play.  Taiten LOVES going to OT.  They are even doing food therapy with him.

Q. Why did you wait so long to get him seen?
A.  I knew when Taiten was 5 years old that something was different about him.  He wasn't developing the same as other kids.  And I noticed that I had to tell him every step of everything, no matter what it was.

Recent example: At 9 years old I couldn't say to him, "go get ready for bed."  I had to say, "It's time to get ready for bed.  Please go brush your teeth, wash your face, then go change your clothes, put away your dirty clothes, say your prayers, then get under the covers and wait for dad to come in."

He was always pretty quirky.  He has a hard time understanding personal space.  There were just so many things that I noticed that just weren't "normal."  It was mostly a mother's intuition kind of thing.  Something just wasn't right.

I waited so long because I had no idea what to even do.  Try going to a doctor and telling them that something just doesn't feel right.  They just say, "He'll grow out of it."  I would go in and say, "He still walks on his feet."  And they would reply, "Some kids just do that."

Try googling, "9 year old walks on toes."  Or, "Child argues about everything."  Or, "My kid won't eat anything."  The only thing I find by googling those phrases were message boards with parents as frustrated as I was and absolutely no answers.

I did this for 5 years because I KNEW something was up, but I didn't even know how to search for it online.  I asked all of my friends and no one knew what to do.  And then finally, when Taiten was 9, one of my friends went to the doctor with her daughter and the doctor recommended OT (she lives in the dream world apparently).  They went to OT and everything about the place screamed at her that Taiten needed this.  So she got tons of information to me and it hit me like a ton of bricks that THIS was what we were looking for.  Hallelujah, I finally had search terms to use on the internet.

I went to my doctor who said, "He's a boy, boys just take longer."  So I went to another doctor who said it wasn't in his purview as a doctor.  And finally, I took Taiten in for a referral to a neuro doc because he was having a lot of headaches.  By that point I was asking every doctor I ran into for referrals for SPD, and I asked her for one and she just did it.  It took 4 months of my annoying every doctor we were assigned to before someone caved and just gave me the referral.

Final words:

I might need to do a series of Q and As because there is so much more I would love to share, and I'd like to go into more detail.

The best thing about this so far is the burden has been lifted from my shoulders.  For so long I thought something was wrong because he was different, not developing like his peers, and now I know that NOTHING is wrong with Taiten.  But he does need tools to deal with life that "normal" kids don't need.  There is nothing wrong with that, it's just what he needs.

Trust your intuition.  If your child isn't in line with their peers, or chews on everything still, or runs into walls on purpose, or shoves/hits/kicks/is too aggressive, or only eats 5 things, or many many many more things, check it out!