Archives for the month of: February, 2017

I could see it starting….

Those of you who have children with sensory issues know what I am talking about.

The start of an overload.

A sensory overload.

For us now, it is usually caused by too much going on with our schedules or emotions about some day to day things that Elizabeth has not talked about.  Back when Elizabeth was little, the overloads or shutdowns could be triggered by as little a thing as putting on shoes or having someone talk to her in public.

But now, it is the above.

So, she started saying she was not hungry.  And for Elizabeth that is huge. It is like saying that “Today I am not going to use oxygen”  That is how significant that comment is.

Then she started humming a bit.  NEVER a good thing.  She does this to calm herself.

Then she started having trouble organizing herself and her system enough to do the simplest of tasks.  I asked her to get something off of the pantry shelf.  It was right in front of her and she was unable to locate it.   

Yes, it was starting alright.

On this journey with Elizabeth, we have learned how important it is to talk, share, express feelings and to teach Elizabeth how to advocate for herself.   

We talk often and long, she and I.

But usually this has to wait until her system is calm again. But the self advocacy is the part that she has been taught to use to help us help her.  It begins by her saying “ Mom, I am overwhelmed, I need a break.” Or “ I need time alone.”  

So our hard work paid off and she said one of the above phrases.

So now came the time to talk about what sensory items she needed to help her.

She picked her “big heavy blanket”,  It is like a weighted blanket but is actually a heavy comforter. And her vibrating pillow.  Whose name is Senseez.

She uses both of these, along with dim light and vanilla wax melts ( plug in ones, NOT flame)….this combination.

This vibrating pillow is something she loves very much.  She says it makes her feel “calm” This pillow has a nice soft vibration to it.  Typically this pillow is used when she is overloaded.

She will pick it when she is nervous or scared.  

Usually she leans on it to activate the gentle vibration   But you can sit on it or hug it as well.

Elizabeth uses the pillow at home during this quiet time, but it can be used at school or at bedtime and for reasons other than the ones we use it for.

About 45 minutes later, Elizabeth came downstairs.  “ I feel relaxed Mom.”  And she looked like it too.  There was a nice calmness to her.

So we took the time later that day to talk about what led to the need for the break.

She had so many things she was thinking about.  Pretty deep things.  Like “Do you think Popi likes heaven because I miss him?”  Popi is my beloved Dad, who passed away almost three years ago. And there were more thoughts and feelings as well.

So we talked and talked and I hugged her when she cried.  I love this amazing child so much.

I am not saying that dealing with shutdowns or meltdowns is ever easy, because it never is.  But as special needs parents,  knowing your child needs and HOW to help them get those needs met, via a sensory diet, is critical to help them navigate this thing called life.

Please take a look at Senseez, a sensory product, and decide if you think it would help your sensory child or ask you OT for their help.  And as always, I would love to hear your thoughts and the successes you are having on your journey.

I wish you a peaceful week.
Michele

Just last week I was scheduled to head to a meeting for my special needs daughter Elizabeth.  You see we are planning the next step in Elizabeth’s journey as she is graduating from high school this year.  So as I prepare to head off the meeting, I get together the necessary paperwork: the IEP (Individualized Education Plan), the latest ETR (Evaluation Team Report) , various reports, anecdotal notes, report cards and probably a few other things.  But you get the idea.

After I get it all together,  I put them into a new accordion file that I purchased for the start of her life after high school.  I thought it would be great to separate the before from the after.

And this got me thinking about the amount of paperwork, notes, and records that become part of your life when your child has special needs.  I happen to be a pretty organized person due in part to my love of office supplies.  I used to be the happy “back to school” child.  You know the one, the one who happily picks out their folder colors and binders. Pretty much the one my young son would love to yell at in the aisle at Target.

Whatever got me to this level of organization, I know I would be lost without it. I may not be able to find a paper this second but I can tell you where it is and I will find it….just give me a few minutes.

I thought maybe I would share how I keep track of the always growing amount of papers for Elizabeth.  Please know, I am sharing what works for me.

1. ONE YEAR AT A TIME

It is very important to keep all information from each school year together.  Such as daily reports, report cards, communication notes that you have exchanged with anyone at the school.  Also, any therapy reports from the school or private therapy.  I keep everything in one folder for one school year.  This way anything that happened in second grade is right there…together.  I tried separating things out based on school related items versus private therapy but that just got too confusing and made two folders for each year.

2. PUT THE YEARS TOGETHER

After the school year is done, I take the folder and put it into a big, waterproof bin with a secure lid.  Two floods in the basement have taught me the value of waterproof!  Once they are labeled, then finding anything the school may need at a later time is really easy and if you forget to put something away, it is easy to locate where it goes as it is all based on the school year.

3. KEEP IEP SEPARATE

I know I said all things in the school folder, but the IEP is such a fluid and working document that I find myself flipping through old ones to read and see how much the goals have been changed or asking myself why then haven’t been.  

I have every IEP in one VERY big folder.  Along with any ETR reports.  

How nice to know all that information is in one place.  Simply bring the folder to any IEP meetings.  Besides its weight, it is pretty nice to have it all right there.

4. USE A TICKLE FILE APPROACH

Some people use their schedules and calendars on their phones to organize their lives. I do a little of that but because  I am a visual person,  I go old school and use a calendar,  the kind with 12 months of pictures, flowers or cats.

I put it on my desk so that the pictures are tucked under and I see only the months.  Then I write down reminders for myself of things for Elizabeth.  Such as “call for volunteering in May” I will slide that in the calendar in the month of April and when I flip to April, I will see it.  

I do this a lot for all my children but especially for Elizabeth because by using it like this she can help me to write the cards, file them and we can talk about the schedule before it really starts.

5. DO NOT BE OVERWHELMED

Even as I read this, I can see how it may seem like a lot of work, but it really is not.  What I mean is think of how many things you have done and worked on for your child that have simply become part of your life.  I think so much of it just becomes habit.  

The same as a sensory diet can become simply part of your day to life so will keeping all the records in order.

As you know, you never thought you would face the challenges of a child with special needs but you did.  You never thought you would rejoice over the little successes but you do.  So figuring out how to keep track of life and still enjoy the good things is just one more thing you can do.

I wish you all a blessed week.

Michele

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