now 3 out of 4

[swellmomma]

Good grief, after years of knowing that my oldest 2 kids had special needs, I have to add my 3rd one to the list now. We were at the ped today yet again for constipation something we have battled since he was 4 months old, only now it's gotten to where he has no bowel control and oozes constantly (okay TMI) anyway the dr mentioned that he suspects ds has SPD, which makes sense when you look at the whole picture of his behaviours which includes fine motor delay(which I was in denial about until today), speech delay(which he is getting treatment for at home), other hyposensorial behaviours etc. So he is putting in a referral to a developmental ped and an OT. He said though he would be shocked to hear it was something other than SPD. In addition to that, he said that once he started thinking about spd for this ds he realized it was the one diagnosis that he didn't think of for ds #1 but is the one that finally makes sense of his behaviours(I have suspected SPD in ds #1 for a couple years now) so is also putting the referral in for OT and Dev ped for him too.

 

He said he will help find me the resources to develop a sensory therapy rom in my house to make it easier to treat the kids at home daily rather than the chaotic mess of only once a week at the OT's office. He also wants me to scrap most of my plans for DS K program and focus on prereading/phonics and fine motor skills, no written work etc at all. HE even recommended which markers/paint brushes etc to switch to for crafts and what not. SO off to order the out-of-sync child, which is the book our ped said to read, and research weighted vests, which he told me he wants both boys to use. SO much to take in in one day. Now to wait and see if baby girl is going to be #4 with a special need or if she will be my one and only neurotypical kid. OI! no wonder I felt like I was headed for a nervous breakdown last week.

 

If any of you have additional places that you get info about SPD please let me know. I want to arm myself to make sure the kids get what they need, jsut like I did when it came to treating the ADHD of the older kids.

[Laurie4b]

Does ped know how much sensory equipment costs??? You're talking thousands of $$ to equip a room like a good OT's office. There are some smaller things you can do that aren't that expensive; perhaps, he's talking about that. However, the really intense stuff they can give a kiddo in OT is irreplaceable.

 

Our ds went to OT twice a week for about two months and then once a week. It was quite effective that way. Our OT actually told me NOT to purchase special equipment because the needs would change so fast.

 

Other books on SPD are the Raising a Sensory Smart Child and Sensational Kids.

[mom2g2b]

I was able to buy a weighted blanket used. I'm not sure where it is right now. We moved to a different house and then the house we were moving from caught fire and burned. I'd be willing to send it to you for shipping costs if I can find it. Let me know if you are interested.

 

Vickie

[Ottakee]

On the bowel stuff---did the doctor check for constipation? That is a HUGE cause of leaking stools. There is a hard blockage and then the loose stool leaks around it and the child has no control. A simple x-ray can find this. Treatment would be something like Miralax to clean the system out and then keep things moving daily. You can buy miralax over the counter now.

 

I am NOT saying that there are not sensory and other issues going on but rather that the constipation/stool issues need a DIRECT treatment right now. Left unchecked it can get harder for the child.

 

Google encopresis for tons of information.

[swellmomma]

On the bowel stuff---did the doctor check for constipation? That is a HUGE cause of leaking stools. There is a hard blockage and then the loose stool leaks around it and the child has no control. A simple x-ray can find this. Treatment would be something like Miralax to clean the system out and then keep things moving daily. You can buy miralax over the counter now.

 

I am NOT saying that there are not sensory and other issues going on but rather that the constipation/stool issues need a DIRECT treatment right now. Left unchecked it can get harder for the child.

 

Google encopresis for tons of information.

 

He has been treated for constipation since he was 4 months old, so he is on lactulose daily, high fiber high water diet, and when it still gets bad we go in and get a script for a stronger laxative to clear him out and when that doesn't work he gets an enema(which he asks for by that point). This was just one symptom in the whole picture kwim, the appointment was booked for the constipation but when the dr took it as a single symptom of a larger picture rather than the only thing like he had been doing for years, it made sense. Everything else has always been there but had not been grouped together until now.

[Ottakee]

Just another thought......has he ever been tested for food allergies? You say this started at 4 months old and that is a typical age for starting solid foods. Dairy and wheat are big ones but it could be any number of other things.

 

I would ask the doctor about food allergy testing and/or testing for celiac (gluten intolerance). If this is a piece of the puzzle, it might make treating the other things easier.

 

Food allergies/intolerances can also lead to behavioral issues in some kids. Certainly not the only reason for sensory issues and learning delays but with the constipation issues as well it is certainly worth checking out.

[kRenee]

You know...Vitamin C works really well to keep constipation under control. I wish more people knew about it. Since my kids were little I have used powdered Vit C in their juice. It's so easy and effective. I give my kids about 1000mg per day. Give it 3 or 4 days to begin working.

 

Get a vit C with little or no calcium. ( that tends to bind up my kids)

[summer]

Yeah..that is about where I am. It is sooo frustrating!! I am waiting for someone to tell me that considering my results in children, I should not have more.

 

Oh wait....someone DID tell me that...my MOTHER!

 

uuggghhh!!

 

 

I still think my children are great and they are great assets to the world and better than most people and more children than ever are labeled these days because whenever you are not in the middle 20th percentile, you are labeled as having something wrong. You can be hyperattentive (have too long of an attention span) and hyperactive (not long enough). Too tall or too short. Too heavy or too thin, grow too slow or fast. Learn how to read too fast, or too slow. Learn math too fast, or too slow. Talk too early, or too late. Be great with half your fine motor skills, but not with the other half. There is always something to pick on. Have too many friends, not have enough. Have friends they are too close to, or have not enough friends with close relationships. on and on and on and on. Senrosry seeking, sensory avoidance...or both! uuugghhh!

 

Can you see I am getting irritated? I love my children and am planning more.

[Southern_mom]

A good book to read is:

The Sensory Sensitive Child - Practical Solutions for Out of Bounds Behavior. I've been reading a lot of books on SPD and this one is

good.

Also there is a yahoo group called Sensory Homeschool for those

who homeschool kids with SPD.

Southern_mom

[swellmomma]

Wow a regular Ped who knows was SPD is?! I had to basically dx my kids first, and then present evidence before I could get the referral to the Dev. Ped who gave me the referral to the OT.......... :willy_nilly:

 

Whoohoo for your Dr. what a great guy! Now is he going to get those weighted vests covered by insurance?

 

I was in denial about dd even though ds was already dx. Welcome to the club! At least they are still young right? :001_unsure: As far as I can tell SPD and many many other nuro issues have at least a genetic component, although there is little research in this area. My kids get it from their father.... ask me how I know.

 

I am already keeping a close eye on the baby so i know how you feel about that. So far she is scared of loud noises (the vacuum and the garbage truck) but that in and of it self is not unusual for a 2yo.

 

 

My OT is going to write a grant so dd can get a swing at home. No promises it will work but we are praying!

 

 

Now that the 3rd has been pretty much Dx I can't blame it on the ex-husband, since he is not the father of my last two. I went through all the testing a couple months ago and they found I had adhd with social delays, so I know that part of things is from me, I have never had an OT assessment but know I have my own sensory issues, mainly with sound. So yeah sadly I have to admit it comes from me.

 

As for vests on insurance, that wouldn't work anyway since I don't have private insurance for Rx like that.

[purplecow7]

When you are getting the Out of Sync Child also get the book the Out of Sync child at play. She give some great ideas for low cost things to do. Like I cut up an old pair of nylons and my son uses those as the stretchy bands. Also I took a bear from the build a bear workshop and filled it with popcorn seeds to make a heavy toy for my son to carry around. Next time though I think I would have filled it with some of those weights you put around your ankles. As I am always afraid he is going to toss that bear and then I will have popcorn seeds all over the house. LOL.

 

Also I bought a body sox on ebay for about $26 dollars. It is this stretchy thing my son gets into to help him get deep pressure. Or you can just roll him up in a blanket too. Bean bag chairs are also great and not that expensive. Part of what you will need will depend on what part of the sensory issues your son has.

 

A few onther cheap things to do is get that chalk board paint and paint a section of wall - doing coloring on the walls is great for building arm strength for fine motor skills and the paint is cheaper in the long run then taping paper to the wall. (I have an unfished basement and I painted one wall and my kids love to go and do chalk on the wall). You can also get those plastic paper covers and cover work book pages and then have the child use dry erase markers to practice drawing lines. Mine does alot of dot to dot that way. Again cheaper then buying alot of workbooks, plus my son loves the markers and the wiping off. Oh and skate boards can be used as scotter boards.

 

Once you have an idea of what the sensory diet is going to be. You can find things that are not that much money to make a sensory room. I do OT with my son almost every morning and night and it has made a huge difference. However the frustrating thing is that I would see continual progress, but it comes in waves with its peaks and valleys.

[nitascool]

He also wants me to scrap most of my plans for DS K program and focus on prereading/phonics and fine motor skills, no written work etc at all. HE even recommended which markers/paint brushes etc to switch to for crafts and what not.

 

A good math program that you can use is Math U See. The program uses blocks of differing colors to teach counting, addition and subtraction concepts. You will have to modify it slightly in that you will not do the writing aspect (or at least not as much writing). The Primer teaches how to write each letter but you can use the games that follow instead of writing in the book... and you can always be your ds's scribe.

 

A good Phonics Program that doesn't "require" writing is Phonics Pathways by Dolores Hiskes. For extra "eyerobics", which some but not all SPD children need in order to get past level 3 books, is called Reading Pathways by the same author.

 

I wouldn't scrap all writing with him. Some writing exercises that a even severely delayed child (like mine) can do are...

 

Body Letters

You can ask your OT for this. He/she should have a print out of all the letters that can be done. (not all letters can).

 

Sand Letter Writing

You will need:

A baking pan with at least 2" sides. (Square or rectangle work best)

2 cups damp sand (we found that Moon Sand works best)

Little wiggly fingers

*later you will need a small stick (about twice the circum. of a Kindy. pencil)

 

Start with your finger.

Draw the letter using the style you chose.

Erase with flat of palm of hand...this is important if you are doing more then one letter. It will Erase the feeling of the previous letter.

 

*At another time do Sand Letter Writing with dry sand, Flour, Rice, Salt, corn meal, pudding, whip cream, shaving cream, etc. Using different mediums will help your child develop more control over his fingers.

When your child can write all the letters and some CVC words in all mediums start using the stick... be sure he holds it correctly. By then your OT will have taught him how to correctly hold a pencil. Use his/her method (there are several) in order to avoid confusion.

 

 

The best style of handwriting for children with fine motor delay is Italic Handwriting and it lends it self easily to cursive writing later.

At this point he won't need the books but you can get a desk strip at the above site so that you know how each letter is formed. They have desk strips for each of the most popular styles of writing if Italic style doesn't appeal to you.

 

Sand Paper Writing

You will need:

Sand Paper

Large (size) and small Letter/Number Stencils (or make your own using your style of handwriting)

Scissors

Glue or paste

Card Stalk

Red marker

A empty wipes box or other small container

 

On the Wrong side of the sand paper trace the letter (backward). Both upper and lower case letters in two sizes.

Cut out letters. Glue to card stalk and cut into equal sized cards. Color (or have him color) the card stalk containing vowel letters.

 

Have ds trace with his fingers the large letters first. When finished store in container.

 

Chalk Writing

Sidewalk Chalk

Sidewalk or Chalk board

 

Draw the letters using the large chalk.

 

If your state requires documentation you could keep a picture log of his progress. Just snap a picture as he does his writing games or lettering on the sidewalk. We turned our photos into a "progress" book which my son still enjoys flipping through. I hope this is helpful to you.

[Kathy in MD]

....... However, the really intense stuff they can give a kiddo in OT is irreplaceable. ...

 

 

I heartily endorse this. For starters, the brushing and compression technique that is almost standard in treatment MUST be taught hands on. The brush must not be too stiff or too soft or brushing will have negative effects. I used the wrong brush once, and immediately saw the horrible results.

 

I've also learned the hard way that it's tricky diagnosing the exact type of SPD. When done incorrectly, it can lead to selecting contra-indicated excersises, making the SPD symptoms worse.

 

Also your OT should teach you how to read your child and intervene before a melt down occurs. If you miss the warning signs, she should also be able teach you how to quickly calm your child.

 

SPD is one therapy I'm against trying to treat on your own. It's very complex to diagnose properly because each major category of problems can be either hyper or hypo and it's not always obvious which it is. Most critical is that there is a small time frame in which a total cure can be effected. Unfortunately most children aren't diagnosed until almost at the end of this time frame or even afterwards. The problems can still be remediated for later diagnosises (prior to puberty) but time is critical in effecting the best results.

 

Go ahead and try your own VT or ST, but don't mess around with SPD.

[purplecow7]

Kathy in MD said

"SPD is one therapy I'm against trying to treat on your own. It's very complex to diagnose properly because each major category of problems can be either hyper or hypo and it's not always obvious which it is. "

 

I guess in my case I would have to disagree, since I stopped going to the OT. We did receive a detailed report on my sons condition and I did see some improvement while we were doing the OT, but I have seen the biggest progress in the last few months since we have been doing the OT every day using the sensory diet that my OT provided form me. I don't think I could have started this on my with without the help of the OT, but I do not think I am hurting my child by stopping the weekly sessions.

 

However with that said, my son has a very mild case of SPD and the OT told us he only needed a "little bit of OT" - her words. Also we do have a specific dx and a plan provided by the OT that we are following with some additional fun things from the out of sync book.

[Mama Bear]

My son's was made for him by ladies who've volunteered with the local Project Linus group. The only expense to us was for the aquarium rock to weight it. If anyone here has a nearby therapy unit through a local hospital/university they're likely to have similar resources.

[Hebrews3:13]

My son has had constipation issues since he was an infant also and I refuse to keep him on lactulose or miralax- they are not healthy. We have been to the ER several times he was so bound up. So I found severely limiting his milk intake helped immensely. (Testing for allergies instead of guessing would be preferable, although milk and wheat would be natural suspects).

 

We give dietary enzymes that help with his digestion of suspect foods. I also subbed in Vances Darifree (chocolate) for the milk he loved to just drink and he was fine with that.

 

Daily fish oil caps have helped as well. Good for the bowels and the brain! : ) I also say get some probiotics and give them to him daily. That helps with keeping the gut healthy. I think my son had some issues there, as when we began those stools actually were a little loose for a few days! It was like Christmas.

 

There are some great herbs out there for chronic constipation issues. I have many more ideas if you are interested. Email me @ gencaf@verizon.net

 

Kiddos shouldn't have to suffer like this.

 

HTH,

Laurie

[Hebrews3:13]

It is really probably 4 out of 4- I am in denial there. My oldest also has some sensory issues, although not like #2.

 

The baby is speech delayed, but lacks the sensory issues- YEAH HOORAY! I stopped her vaccinations after #3 was diagnosed with autism, so voila- a child who doesn't cover her ears for any loud noise, scream when you cut her nails or brush her hair, insist you remove all tags from her clothing, idea of a good time is my laying on her, or refuse to eat a banana because it has a "string" on it.

 

It is not fun, but more and more kids are like this and will be. We live in a toxic world. Call me a freak show, but my family is living proof. My in-laws think I am "radical" since I homeschool and stopped vaccinations, but now I look at my precious little baby girl and say "Praise God I stopped" or how bad would she be?

 

You are SO not alone. I have a friend with 4 kids- all autistic.

 

If you ever need to talk, let me know.

[tonygirl]

I have 5 out of 5 here. Our insurance here wouldn't pay for anything sensory but we have state insurance maybe private is different. We have finally got a children's mental heath case manager he helps us get things we need. My OT make a written recommendation and then the county decides if we can get a grant to pay for it. I COMPLETELY AGREE with not doing a sensory diet or program w/o have a qualified OT oversee it change modify it or stop it. We use weighted blankets oral motor things swing tramps and right now the therapeutic listening program ( my 6 yr old ds is potty training NEVER THOUGHT THAT WOULD HAPPEN!) Our kids may all have the same dx but everyone of them present with there own set of symptoms and they seem to react differently to the same sensory input believe me I found this out the hard way. Also the brushing program completely did not work for us.:glare: Oh well thats the nature of the beast;)