Category Archives: autism

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!

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Are We There Yet?

Are We There Yet? Who hasn’t asked that question at least once? The American family vacation. We are headed to visit my folks in West Virginia, yes that’s a state all it’s own people. My hope is that we make it as unmemorable as possible! It is the first trip in a year since we moved here. I am at least not dreading it this time, yet. I have actually cancelled this trip a couple times this year because I just wasn’t ready yet. Just the drive alone, albeit short is still long with 4 children. I always wait until the last minute to pack and then end up in a frustrated flurry. I end up forgetting things, blah, blah, blah.

So far, although I waited everything is running smoothly. Well, except for 3 out of 4 kids being sick and one screaming at the top of her lungs over a toy. Even for a short trip, 3 hours or less, you still have to prepare. Suitable snacks and toys for all, pillows, blankets and a lovey, and activities to keep them entertained. Then, an entire bag of safe, effective sensory toys to keep my girl from losing it. Unfortunately, on these trips she ends up in the 3rd row seat, which is not ideal for her. I have actually had to bail over everybody to help her calm down before. I will be driving this time, so I won’t be able to do that. The most important thing I must remember is never ever to let on I am frustrated. I must let a calm, quiet voice out, even if it’s screaming in my head.

What are appropriate car toys? Small stuffed animals, magna doodles, books, and nothing that looks like it wants to be thrown. For a 10 year old with autism, safe chewy’s made for an older child, small squishy, stretchy toys and lots of crunchy healthy snacks like granola and pretzels. Oh, and a cotton(for breathing purposes)pillow case to hide her head in for “alone” time.

Welp, wish us luck and have a safe and Happy Thanksgiving!

The Long Road to Autism-Part 2

This Post is the 2nd part to The Long Road to Autism-Part 1.

So, there we were out in the South Western part of Nebraska. In a little town called Ogallala. There was only one counseling group in town, which we were unable to get into to see anyone. I found a job and lost that job because I had to leave so much to go to the school to clean up her potty accidents or give her the random hug. After the twins were born, we started seeing a pediatrician an hour away. He asked about my other children and I mentioned my girl’s difficulties. He suggested I bring her into him that maybe he could help. I was skeptical but I did schedule her an appointment with him. This is where it all began. The road to our diagnosis.

He looked her over and recommended that we meet with a psychologist that would be traveling there to their location once a week from Munroe and Myer Institute. She was diagnosed with ASD(Autism Spectrum Disorder)just before we relocated again. I thought that with this diagnosis everything would get better. I wasn’t figuring into the equation that still no one was going to believe it. My sister actually asked for credentials and proof. My husband was more convinced but not completely. It’s no wonder why so many families with special need children end in divorce! We didn’t, haven’t and have no plans to but sometimes he  it is still challenging.

We ended up back home in West Virginia for 9 months. It was just long enough for her to be enrolled in public school and for them to decide to rule her diagnosis out! Yes, you heard me. Mind you she was 8 in the Spring when we got the diagnosis.  Now, 9 and being taken off the spectrum. I was at my wits end to say the very least. Didn’t these people realize how much early intervention we had already lost?! It took 4 years to be diagnosed and less than 6 months to be un-diagnosed.

After speaking with my Aunt at great length and doing my research on the web. I concluded with out help from said husband that we needed to move 1 more time and it was for her this time. He would have to find a job once we got there. So, we found a home, purchased it and moved to Cleveland, Ohio.

I am happy to say that I am not going to bore you with the mundane details of the past 9 months but I will give you the highlights. We went to the city and spent 3 1/2 days in the actual school for the IEP process. They arranged for home based schooling while the rest of the process was finished. BTW: They said the IEP that was wrote in my home town was the worst they had ever set their eyes on. Once completed and signed we went through all the red tape to get her in a special autism school. Yes, that would be the one that didn’t work out but no one ever said this process was going to be easy, right?!

So, many other crazy things happened to us during those 9 long years. She suffered 4 plus years with severe acid reflux to no avail. She had every test, biopsy, MRI and more to figure out what was wrong with her gastrointestinal system. Only to discover that there was nothing wrong with her system but that she really does have an autism disorder and it is what was impairing her ability to potty train. She is still battling regular urinary tract infections with a daily dose of antibiotics. All of these are a short laundry list of secondary illnesses that children with ASD typically fight throughout their childhood. One final note on that said disbelieving family: They all believe now and that’s all that matters.

My girl is now 10 and being home schooled again. I have, however, found some great resources to help me with this and figured out(I think)what to do with the rest of the scholarship. I will update in later posts on those things as they play out. She has been diagnosed with ADHD and Trichotillomania in the past 2 months, which I am certain without a doubt she has also. I have done my own research right after seeing the specialists. You have to be a persistent pain-in-the neck advocate when it comes to your children. Also, I am still not a professional writer and there are still mistakes in my writings.

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.

The Long Road to Autism-Part 1

I have so much to say. . . I never can decide what to say first! Shall I start with the story of the long road to her diagnoses? Why not! I’ve already momentarily forgot what else I was thinking of writing today. This happens a lot to me! Lack of sleep and too much stress combined with fibromyalgia has greatly affected my memory and ability to function. So, here’s the first part of how our life began with autism.

When my girl was a couple months old I was visiting my therapist who I had weekly appointments with. I was suffering from severe depression from life. Having a baby and being abandoned by her father in the first trimester had devastated me and compounded the already there lifelong depression. Needless to say I needed therapy weekly and had for quite a while. While at that appointment, my girl was doing her regular “dancing hand movements” in front of her eyes thing that she regularly did. She was around 3 months or less then and I asked my therapist if I should be concerned. I didn’t know much about autism then or babies for that matter. He said no, that all babies do that. Really?! Well, 4 kids later, she’s the only one that did. I knew then. A mother’s instinct is often right.

At a year old, her pediatrician recommended she be tested for developmental delay by the state. It was free. Free does not always equal better. They came to our home and tested her. She did everything they asked. The tests reveiled that although she was developing behind other children she was still within range.  In the end, they determined her delays were “lack of exposure” because I kept her at home instead of putting her in day care. Well, imagine what that did to my ever growing depression.  She went from not talking for almost two years to full sentences in zero point 2 seconds. It would be 3 more years before anyone looked at her again with suspicion about her development.

We moved two more times by the time she was 4 1/2 and I had had another child by then. During that pregnancy, I spent a lot of it in bed neglecting her. Again I am blamed for her lack of development, but in the potty training arena this time. Just before we moved, after she turned 4, a close friend who had a daughter with autism, suggested that my girl might have a form of autism. Boy was I mad! I told her just because her daughter did didn’t mean all kids did, especially mine! I had no clue and I was ignorant in the subject to boot.

We settled into our new home and sent her to preschool. They took her even though she wasn’t even close to being potty trained. She actually made it through most mornings accident free. As the year progressed, it became evident that something was going on but what?! We pressed the school district to come in and test her. They did and determined her delays were not severe enough to address with an IEP. Then came Kindergarten. I ended up keeping her home to home school because she was regularly going in her pants at that point. We were also dealing with constipation from birth and treating it with laxatives which wasn’t helping her predicament. We would spend years being told it was her constipation that was keeping her from becoming potty trained.

During that year of home schooling, I as a teacher and mother realized that something was definitely wrong. My sister-in-law speech pathologist tested her for auditory processing disorder. She came up clean except for phonics. I worked hard on that subject all year. We would practice and drill all the while she would flip on the arm of the couch and rub her naked body on the wall. She was diagnosed by an OT with Sensory Integration Disorder that year. I began researching autism again and discovered the spectrum. I became fully self-educated in the subject and am now well versed in this area. After all this research I became convinced when she was 5 1/2 that she had some form of high-functioning autism. I did as the national autism site suggested and went straight to the pediatrician multiple times. I got shot down every time. Ironically, sometime around when her younger sister was 2 their dad kept seeing autism signs and was all freaked out and wanted the younger one to be evaluated. Funny in a not so funny way how things work out, isn’t it?

She began going to OT and behavioral therapy. Oh, the behavioral therapy and how that began. . . well, 1 day she just started self-injurious behaviors. It started between 4 1/2 and 5 1/2 years old. It was terrifying. I have to admit the first thing I thought was that someone had molested her. What other reason would a child hurt themselves intentionally for?! I had experience in this arena too because of my own childhood experiences and this is all I knew when it came to self-injury. Once I ruled this out and got refocused I began to pursue a spectrum diagnosis or at least an evaluation anyway.

The next move came. This time out west in a little town in Nebraska. It was a one horse town. I finally settled on a small christian school. I explained the situation to them and they were willing to take her un-potty trained. The teacher asked if there was any books I recommended she could read. Now a days, you can go to the library and find plenty to read about sensory processing disorder, still her only diagnosis; but not at that library. This one horse town with less than a 5,000 population was short on books and resources.

It would be an entire year before anyone would even consider helping us and an entire pregnancy later. Another pregnancy spent in bed. Another pregnancy where I get to neglect her and my other child because of complications. Well, mostly her because she kept to herself and started “gaming” on the computer a lot. Her little sister would bring activities to me and we would do them in bed everyday. However, my girl did not. Why was it no one could see what I could so plainly see? Let me enlighten you on that question briefly. No one, not my sister, not my brother or sister in law and not even my own husband believed she had a spectrum disorder. My mother was my only ally and even she often turned on me behind my back to my sister. Oh, the tears I could shed and sometimes do over that mountain of pain. FYI: What it took to convince them all is unbelievable! No one should have to go through what I went through and this will become my purpose someday. An advocate to other parents that know and know one believes.

To be continued. . .(Don’t you hate movies and shows that do that! This post is way to long already.)

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.

Hello world!

Still working on setting this (my new blog) up. Be patient and come back. It will be worth it, pinky promise!