Tag Archives: Health

How to Buy a Winter Coat for Sensory Integration Disorder

How to buy a winter coat for sensory integration disorder could turn into a disaster but it doesn’t have to! My girl and I both have sensory integration disorder and I have been successfully buying coats for both of us for years. I will attempt to highlight some guidelines for you to try. I am not a professional dr or occupational therapist, this can not replace what they prescribe. However, I learned on my own through trial and error.

“I started taking my DD with me to feel, try on and pick out her own clothes and coats a couple years ago. We go alone, just me and her. I always make sure we have hours to spare. She touches and eventually tries on a few chosen ones and then usually settles with the one she feels best in. I, also, have sensory processing problems at 39 years old, so I know what she is going through. It is helpful to buy something soft and a size bigger than I need; it seems to not constrain my arms as much. Also, I try to steer away from collars for myself because it bunches at the back of my neck. It is really hard to drive when I have these things interfering and can ruin my day. It’s hard to refocus after a sensory attack by clothing. It’s best if his energies are spent on school work and just being in school than wasted on a coat. I’m slowly learning to pick our battles. There are so many choices for winter wear that it is not one I choose to fight. Often I can find a way around most of my sensory issues and my DD’s if I try. Be creative! Always remain calm(difficult I know).”

This was a comment I left on a post from a blog I follow. So, to recap the points I made to this other mother and add a few extras to make the entire event a successful non-event.

* Take child with you and NO ONE else.

* Give yourself plenty of time.

* Let child touch, feel and try on as many as they need to but only try on once.

* Leave if they can’t handle it that day. There’s always other days to try. No pressure. Do not act disappointed. Encouragement and patience are key here.

* Take potty breaks.

* Reward with a meal out even if they don’t stay calm the whole time.

There are so many different types of material out there, styles and ways to dress and layer or not that with diligence and a lot of patience a purchase everyone is happy with can be made. Most sensory children and adults prefer soft, fuzzy, shiny, warm and no layers. No two people, sensory disorder or not, is a like. I am still not a professional seasoned writer and there are still mistakes in my work. Hope this article helps you and if you have any questions or comments please feel free to click on the ‘leave a reply link’. I would love to hear from you!

Advertisements

Sick Exemption

I interrupt this regular program to bring you a special announcement, actually more of a statement. Parents should be exempt from sickness, especially parents of special need children. Not to say we are better than parents of nuerotypical children or more worthy. We may not even be less stressed but since I have no idea because I have never been just a parent of a nuerotypical child, I say this in selfishness to my situation. I hope not to offend anyone, just to simply vent.

I received bad news this week, and now I wait to see if the bad news is going to turn worse than bad news or just remain the same. I had to go to a gyn specialist because my regular dr had some concerns. He said as long as I come back cancer free in my “underworld”, then he can fix everything else. He said the good news is that he is a minimally invasive surgical specialist.Um, okay. Well, glad to hear it, I think.

So, what is the bad news I received? I apparently became too greedy when it came to wanting children. I had more than my body could carry. Some of my major organs are now falling out of me in a very literal sense. The ones I don’t need will be removed and the ones I do need will be repaired. The specialist did say he could fix me, that is good news. I sincerely pray that God has given me all that I can handle because I can deal with this, even though it is “serious”. As all mother’s do, I hope my children are not meant to be motherless.

*I am not a professional writer. Most likely there are and will continue to be mistakes in my work. I apologize. I am forever trying to improve and educate myself. Thank you for reading my work. I crave social interaction, please comment! I would love to hear from you and will always reply personally and individually to everyone.

Labels aka Diagnoses

 ‘Tis but thy name that is my enemy;
Thou art thyself, though not a Montague.
What’s Montague? it is nor hand, nor foot,
Nor arm, nor face, nor any other part
Belonging to a man. O, be some other name!
What’s in a name? that which we call a rose
By any other name would smell as sweet;
So Romeo would, were he not Romeo call’d,
Retain that dear perfection which he owes
Without that title. Romeo, doff thy name,
And for that name which is no part of thee
Take all myself.’

Shakespeare’s Romeo and Juliet

What do all these labels mean and do we really need them? So many folks run from having their child “labeled” or diagnosed with anything still today. The stigma of a diagnosis is still so harsh. What those people do not understand yet and I hope to be a small part of helping change this is that we need those labels today for proper help, treatment and resources. I was told once if you don’t use the resources available that you qualify for then those programs will start disappearing, which negatively impacts those that are using them. What programs am I referring to? Well, IEP”S are and will always remain in place(I think). However, there are financial programs that grant out scholarships to the parents of those children that they are developed for.

We have received the Ohio Autism Scholarship for $20,000 for our daughter. We made the choice to pull her from public school on the basis that we thought a special autism school would be better for her. It may still be the right choice but I think not the school we picked. There are other’s out there we will have to visit to see if one of them may be the right fit for her. This scholarship pays for the special school but it also, gives us the choice to homeschool and use the money to receive the services from a list of providers to fulfill the IEP requirements. The list is extensive and as long as the treatment is on the IEP, then it’s covered. Thank heavens! It only took me 7 months to figure this out! I happen to also have a working relationship with the OT(occupational therapist) that works with her, so that means we were able to change the IEP to include self-esteem therapy and The Listening Program we have coveted since February of this year.

What does self-esteem therapy look like? Your guess is as good as mine but I get to make that up as I go. Yay for us! Big Win finally! I can make that into art and music therapy, swimming lessons with an autism specialist, and so much more! In a nutshell, all the programs I was drooling over when we moved here and couldn’t afford. Well, if I homeschool that 20 could go pretty far! So, what about labels and diagnoses am I trying to express, really? Don’t be afraid to get one to help your child. Do not let them fall through the cracks like I did and so many of us did when we were in grade school. When I was going through a lot of this, even if I had been diagnosed there was no help or money for help back then in the 70’s and 80’s.

Now, someone over the past decade or so has cared enough about our little ones to work very hard to create these programs and you can only access them with a proper medical diagnosis. If you are concerned and think that your child is not developing properly based on the general rules pediatricians follow, then by all means don’t hold back it is worth the mention to your child’s doctor. Early intervention is so very important but if you miss the mark for that be persistent  like I was. It pays off and your child gets help eventually. That there is a post all to its self, the road to a diagnosis or 3 was a long one. There were times I wasn’t sure I’d make it but I never gave up.

A last note on labels and diagnoses, remember that it is not the labels that make them up. They are more than the diagnoses given. That is what you are fighting for by getting them diagnosed. As parent’s it is our job to rescue them from the symptoms of their diagnoses. The only way to do that is to seek help and receive those “dreaded” labels.

Help for Siblings of Autism

We watched a movie today that I picked up from the public library for the 7 year old sibling. It was everything I expected it to be and more! I highly recommend Understanding Brothers and Sisters on the Autism Spectrum by http://www.coultervideo.com, if you have other children that are nuerotypical to help them understand their sibling with ASD better. It is broken down into sections for different age groups. The length of the video section is based on the age group it is geared toward. So, for children 4-7 yr  it’s only 7 minutes long. The next section is for 7-12 yrs, which is 25 minutes in length. I don’t recommend watching the first 2 back to back if you have a 7 yr old. It was a bit too long.

We discussed it briefly afterward, so I could gauge what she got out of it, while it was still fresh in her mind.  I asked her if she learned anything. She said yes, that she learned things she could do to help them get along better. Like, when they are playing she could be more flexible and play what her sister with autism wants to play and not get upset that she is telling her how to play because she can’t help it since she has autism. She learned how to help her in situations that are stressful for her and how to help her calm down. Also, to get me if she seems like she may hurt herself or others. Mostly she said she learned that it is not her sister’s fault and that she can’t help it that she has autism.

All in all, I feel that this video was excellent and I plan on getting the whole family (my sister and her kids, step kids) to watch it too. I was not in anyway compensated for or asked to write this post. Everything in this post is my opinion and wrote because I chose to.

This video can be purchased http://www.amazon.com/Understanding-Brothers-Sisters-Autism-Spectrum/dp/B000SNUSEW/ref=sr_1_1?ie=UTF8&qid=1352213727&sr=8-1&keywords=understanding+brothers+and+sisters+on+the+autism+spectrum+video if you would like to own it. They do have some being sold for less that are used. I plan on purchasing one of them, asap!

Homeschool vs. Autism School

For years I have struggled with this decision except in the past the competing school was public/private not a special Autism school. One would think the decision easy, child has autism. . .child goes to autism school. Since she began going to the autism school 7 months ago, her behavior has become worse and she has begun pulling all the hairs out of her body. We have recently learned that this has a name. Trichotillomania. It has frightened me, grossed me out and worried me none stop for months. I believe I have a permanent frown in my brow now. I have done some research on the subject and have recovered from those emotions mostly and am beginning to help her not do it as best we can without making her feel bad about it.

It should be clear that this particular special autism school is not the right one. So, now what? I have a set of 2 yr old twins at home and a grandmother that has no patience for them. It puts me in quite a predicament. I, also had recently begun fulfilling my own need to be successful through painting, drawing and crafting. Of course, these things fulfill more than that “monetary” need. Success is defined in so many ways. It fulfills my sensory needs, emotional and spiritual needs in so many ways. These activities will have to be put on hold indefinitely as I am no super mom. I read other’s blogs where they are crafting, parenting wee ones all day and blogging about it. WTH! I don’t know how they do it.

I have been placing phone calls nonstop for 2 weeks trying to find anyone or anything that can help lighten my load with the task at hand. So far, progress is slow. Mostly due to needing to fill out paperwork to apply for financial assistance for the programs I can enter her in. Which has been our barrier for well over a year now. Finances. Money. No money. Frustration.

Today we choose to keep her home on the basis she do exactly what I want with no meltdowns, etc. So far it has been a success! She has watched 30 minutes of the history channel and wrote a 4 paragraph paper on Tsunami’s. Drew a picture using the paint program on our computer. It was supposed to be a pic to go with the paper but she veered a little off course. It turned out to be a pic of her on a tightrope above a pool of dolphins with a stadium full of people watching. I guess in some way that is her version of a Tsunami.