Tagged "sensory system"


4 Tips to Live with Sensory Processing Disorder

Posted by Deborah Grauzam on

“Okay Michele, we have a room on the 5th floor, so we can all get into the elevator now.  Our room is ready.” My husband John says these words. They are heard by our children who fly to the elevator, all excited to start our vacation.

What I hear is ELEVATOR!!!! 5TH FLOOR!!!!

What I feel is ANXIETY!!!!!

So I immediately try to find a way out of going on a packed elevator. Maybe I can walk the steps up … No, not a good idea, especially with suitcases.  Maybe I can sort of sit with the extra suitcases and then walk up once they are all out of the lobby … but soon there are no excuses and I find myself IN the elevator and truly feeling the anxiety and saying nothing to anyone.

TalkTools - SPD

Let’s face it: we all have that certain something that creates anxiety, that makes us wish we were somewhere else. But what about those who have that type of anxiety all the time? The ones who have that anxiety over a good portion of the day for reasons that to us may seem small but to them are huge.

Our daughter Elizabeth, as many know, has Sensory Processing Disorder or SPD.  So she feels this anxiety. Not everyday. Not all the time. But the anxiety is there in waiting and can show itself at any moment.

But how do we deal with it?

How do we make gains in life with it?

How do we create a life with and for Elizabeth?  Here is what I learned.

If you read the last line in my scenario above, you see the words “and saying nothing to anyone.”  Initially, this is how I chose to deal with some of the challenges of Elizabeth’s sensory issues.

  • I covered up for her.

  • I took her out of places quickly.

  • I avoided places with her.

But what I did NOT do was talk about her disorder.  I did not tell those around her why she was crying or having a meltdown.  I could have turned to those who cared about us, but instead I turned away from them to hide, and that is not a good thing.  It is very lonely, isolating and sad.

TalkTools - SPD

1. The first thing I would suggest is to TALK.  To those around you, friends, family.  Let them know what is going on and they will be able to help you and support you.  It feels so much better to reach out than being alone.

Something I know now and did not know then, was just how the SPD would affect Elizabeth.  It affects every child differently, so knowing what makes your child anxious/afraid or knowing what stimuli your child needs to remain calm is vital to life with your child.  With this information you can mentally analyze a situation for potential anxiety triggers, things that might cause a meltdown such a sounds, lights or even smells. Or plan sensory breaks to offer your child the stimulus they need at that moment.  Or just having a back-up plan for when things just do not go as planned.  Knowing how your child works will help others learn as well.

2. The second thing I would recommend is READ:

  • Articles on SPD

  • Personal stories from other families

  • Books on sensory issues

  • Even Facebook groups for families of children with SPD.

Being armed with knowledge helps more than you can know.

We are all made differently. We all have different likes and dislikes, talents and skills, but something that we all share is the desire to be accepted.  Be it by those in your peer group, those at a workplace, those in your family or just by society in general.  Being a child with SPD can set you apart from most people.  Being a family member of a child with SPD can also be a challenge. But you can help this.

3. I know from personal experience that Elizabeth was the only child I saw last Sunday who froze at the door to Office Depot.  She cannot enter that store without sweating and almost shaking as it is too bright and too vast for her SPD.

Were we set apart from others? Yes. But the thing is, we already knew that she probably would not enter (we still try) so we had a Plan B.  In other words we accept this part of Elizabeth as being just that … part of Elizabeth.  So we were ready and able to help her. The SPD is one part of the puzzle that makes up a pretty amazing girl.  Do we like it?  No, not really.  But do we accept it and her?  Absolutely!  And I know that having her know this makes all the difference.  She knows we will love her and support her no matter what.  Kind of nice, huh?

So I offer out ACCEPT as the third piece of advice.

Accept your child for who they are because they have so many more parts and pieces to them other than being affected by SPD.

Trust me, we are 18+ years in on our journey, so the advice I am giving is road tested.  It does not mean it is easy, as it is not.  But I will say it is worth it.

4. And lastly … LOVE

Love them for the strength they show each day, through feelings and emotions that could fell the strongest of people.  And tell them about this love.  Reassure them when they stumble and praise the heck out of them when they succeed.  Hug them when they allow and don’t when they can’t handle it.  But let them know, as we have each day of Elizabeth’s life, that they are a gift. And that your love will never change.

I wish you all peace in the month of April.

-Michele Gianetti

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

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Socialization at school

Posted by Deborah Grauzam on

peer-group 

Sometimes it is weird how you will look back on certain times in your life and see the struggles you had quite clearly.  But at the time, you are simply so in the moment that you don’t really realize just how tough it was.  I will use the example of how we handled the socialization at school.

When your child has special needs, their road in life is unique.  Filled with milestones that occur on their time frame.  One of the huge milestones in life is the biggest social scene called school, be it preschool or Kindergarten.

Elizabeth, as many know, has Sensory Processing Disorder or SPD and Global Dyspraxia.  Both conditions affect her ability to:

  • Talk,
  • Interact with peers,
  • Be comfortable in public situations.

So, how to begin?

WITH THE TEACHERS

When we entered Elizabeth into her first preschool, we made sure to inform them of her disorders, giving them examples of how Elizabeth might act when overwhelmed or frightened.  But what we did not do was work with Elizabeth on how to act or behave.  I think we were so darned proud of the fact that she was in the preschool and wanted to be there and was happy to be there, that we allowed the teachers and staff to help us learn the ways this thing called preschool worked.  We learned to work with the teachers and truly, the pressure was off here as she was still so young.

We began to see just how social Elizabeth was when she entered her Pre-K program.  Here things got a bit more serious as they did:

  • School work,

  • Gym class,

  • Participated in stations for learning,

  • Prepared them for entry into school.

I think this time was so fun for Elizabeth, she loved being with the other children, but her language held her back a great deal.  It was here that we began to really rely on the teachers to encourage interactions and friendships inside the classroom.  Again, it is important to remember that we told them all about Elizabeth which is something that can never not be done.  But we also found ourselves asking about these buddies and friendships.  It is hard to watch typical interactions taking place around you when your child is not capable of those things.  But I offer out, that sharing your thoughts and feelings with these teachers can help tremendously.

How to continue?

WITH SOCIAL STORIES

We started reading social stories to Elizabeth, started discussing them with Elizabeth. For children with special needs, it is the repetition and frequency of things that helps them process information.  So with that in mind, we read the stories often.

We would at times:

  • Adapt them to her situations at school,

  • Write ones to fit her needs,

  • Write funny ones to help make a point.

These stories are a wonderful springboard for a discussion (be it more one way than two way due to Elizabeth’s speech delays).  But the ideas and thoughts start to flow and that can never be a bad thing.

What to do next?

MEET UP WITH A FRIEND

Sure I could mean you meeting up with a friend to vent, but in this case I mean a friend for your child. J Yes, as much as this may send a cold wash of fear over you to read, it is something that we did at an early time.  It was not easy, it was not relaxing, but Elizabeth was happy to have the time with a friend.  Sometimes it went so well and other times I was hyper-aware of how uncomfortable the whole situation was.

But we tried it again. And we talked about it after the time was done. And we talked some more. All of which helped Elizabeth grow.

How to continue?

TALK, TALK, AND WHEN YOU ARE DONE … TALK MORE

The thing about social stories is that they are neat, tidy and everyone says everything just right. These are helpful and needed stories but I will say from vast personal experience, that never, not one time did something go just like a social story says it would.  There would always be some renegade person who would be in line at the store and instead of saying what the script said they would, they would say how pretty Elizabeth was or ask what grade she was in and then all bets were off as to the responses from there.

So as tough as those early socializations were, we learned that:

  • Talking through the experience helped Elizabeth learn for the next time.

  • Talking through what was good helped reinforce positive thoughts for the next time.

  • Talking through events helped me be able to share my feelings and thoughts with Elizabeth and helped her understand her feelings as well.

Talking, in my opinion (ask my family) has always been a good thing!  Never underestimate the positive things that can come from spending time together talking and sharing.

So how to conclude?

THEY CAN ACHIEVE

Socialization is one of those things that you are part of, that you have grown with, and that you can continue to make gains with.  If you think about it, we are all never done growing in social ways with how we wish to present ourselves in certain situations, when making a presentation or even how to handle a disagreement.  So our children are simply growing as well.  We need to be there to help them take the next step that others take automatically.

  • Use examples of everyday experiences to help them.

  • Encourage expressions of any emotion.

  • Praise them for trying.

  • Encourage them if they fail.

  • Let them know you believe in them, always.

I wish you all some great conversations be them, via communication boards, devices, full of short sentences or long beautiful ones … It all counts and it all matters.

-Michele Gianetti

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

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