Somewhere in my book I know I reference “Team Elizabeth” and at the time, it consisted of her OT, her exercise trainer, her tutor and her speech and language pathologist.  Her “team” has changed as Elizabeth has grown.  And the “team” reflects her needs at the time.

For example, when she was younger a vital member of her “team” would be her Ear, Nose and Throat (ENT) specialist.  And at another time, we would have added the name of the doctor who managed her brief, but productive and very costly foray into the area of biomedical treatment.

We now have an entirely different “team.”

It fits her needs perfectly.

They all “get” how Elizabeth works and know how to help her grow and achieve.

But how did we get these teams way back then? And how did we help them learn about Elizabeth’s disorders so that they in turn could help her?

Well, it all starts with getting through the first big block to this journey and that is to work your way through denial.   Maybe some were blessed to sidestep this feeling and maybe others were able to get to the other side of it quickly.  But for those like me, it was a pretty tough and pretty big force to face.  It took a lot of work on my/our part to allow the words about Elizabeth in, to face the truth that what we wanted to see and make real, was indeed not there.  It took us listening and not just hearing and allowing ourselves to feel the loss of typical and the acceptance of special.

After denial is behind you, the real work can begin.  Know that you as parents know something or things are not right.  You know in your heart the things you see each day are not what you are supposed to be.

Please begin by writing them down on paper:

• When they happen.

• How long they happen.

• When you first noticed them starting.

• How often they happen.

• What you do or cannot do to help your child.

• How these affect your child’s day.

These things are so important when you try to explain your child to a professional.  For two reasons:

• You will NEVER remember them all when the moment arrives to tell them all.

• It is easy to make a copy of the above and share it with professionals at will.

After all, you are the person with your child during a typical day, doing typical times.  How hard is it truly to have your child act like it is just any other day when they are in an exam gown or are in a waiting room for a long time?

Look up what you can about the signs or delays your child is showing.

I know that this can be unnerving but sometimes just trying to understand about a subject that is foreign to you can also be a bit of a comfort.  I know that reading about Elizabeth’s speech delay helped us make sense of some of the frustration we saw in her.

Print out what you want to share with the professional.

Talk with your child’s pediatrician.

This is where the things you have written down, the anecdotal reports, the internet information will help you help them understand.

Be honest and truthful.

Ask them for advice on where to go next.  Ask them for a referral for further testing if needed.  Ask them for a diagnosis if possible.  But do not allow the moment to pass, when you WISH you would have asked your tough questions.

Pediatricians currently are required to assess for developmental delays but when Elizabeth was young, they were not.  So they are more ready to offer suggestions of where to go and whom to call.

Please remember that you are your child’s best advocate.  And that if something feels wrong in your heart, then in my experience, it probably is not the right fit for your child right now.

Getting together the “team” that works the best for your child is a process.  Getting a diagnosis is important.  Getting the right professionals for your child is important but being able to present your child’s delays and needs to any and all who work with them and getting them to understand your child is by far more than important … it is critical.

Your “team” will be amassed over time and you will be the quarterback, managing them all.  

Please know that as the “team” changes it means your child has changed as do all children, those with special needs or those who are typical.   Change can be hard but change can be a very good thing.

Know your child, know their needs, speak for them and about them. And let them know you love them through it all.

Please know that a diagnosis is a very helpful thing to have for insurance purposes, school testing, IEPs, but sometimes before the diagnosis is made, your heart tells you what is “just not right.” For us, NO real language at age two. We saw a lack of motor skills.  Not walking, not sitting up.  And there were so many other things.

We made a list in our heads.  We knew we needed to find help for her.

-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.

“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.

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.

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.

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.

I can remember that I was living so deeply “in the forest” this year that I did not “see the trees” I was so deep in concentrating on Elizabeth’s sensory needs, her therapies and their follow-ups at home as well as our older daughter’s needs and well...LIFE that I don’t think I looked up to take full notice of that changes in Elizabeth and some of her new growth. “Michele, she needs her own social group. Elizabeth is such a social child” That was the direct quote from our first speech therapist when Elizabeth was four years old. Kathy was her name and I simply trusted her completely. She explained how Elizabeth would follow and attempt to engage the children who had appointments before and after hers and how Elizabeth looked so happy being with other children. I remember taking a moment to let her words sink in and during this moment I wondered if Kathy WAS right...was I so busy doing “life” that I did not notice? WAS I so busy getting from day to day that I simply did not have the time to see that this was the next step for Elizabeth? Sometimes when you are dealing with the special needs of your child, you can forget the “typical” needs they may have.

I found myself quite thankful for our therapist for a new reason. At this time, we had been on our journey for about two years, maybe a bit more and as such, so much was new to us. But the one thing I realized for the first time then and truly countless times since, is that the therapist can become a dear friend to you and your child. And as such they can have opinions and ideas for and about your child that can be very helpful. They can teach your child things you cannot, and expose them to ideas you don’t have the ability or brain space to figure out how to do. This is a good thing...no, this is a GREAT thing. Listening to Kathy made me think of this thing called socialization....So much socialization takes place in the school or preschool setting....Social skills are being learned and mastered and one of the key pieces of socialization is the ability to talk. Which Elizabeth is working hard to do. It is the sharing of feelings and thoughts. This is not such an easy task when words are at a premium, clarity is questionable and sentences still remain a future goal. I heard what Kathy said, filed it away in my “ Look into it soon” category and started to look.

The preschool hunt was on but it troubled our hearts that the words said by our daughter were coming but they were still half words and if she was stressed, there were no words and if she had fluid in her ears, (which we began to battle as long as 2 years ago), there were only unrecognizable sounds. There seemed to be a piece that was needed. We visited Mary and she discussed our need to work on the muscles in Elizabeth’s mouth not so much the oral stimulation as we talked about last post but to add in muscle work...kind of like a gym workout for her mouth. This was to help address the dyspraxia, which was why Mary showed us the bite gradient sticks from TalkTools and told us we were to try to use these to help strengthen Elizabeth’s jaw. She told us how to count to 10 while Elizabeth bit down and then to have her stop and then repeat. This was quite the undertaking as sensory issues always played a part. But we were able to achieve the goal.

Mary also had us working on using a tiny circle, called a lip block, that we were to put on the end of Elizabeth’s straw to keep her from putting the straw so far in her mouth that she was sucking on the straw without using her lips to create the seal. Therefore we would be working the muscles in her lips and how she used a straw each time she drank. Please note at this point, two important facts. Number one, Elizabeth absolutely never drank without a straw and so, number two, Elizabeth grew to hate the little circles. I bought several so that if they were to “mysteriously” disappear another one would magically appear. It was the battle of the straw circles, I smile as I think of her spunk regarding these lip blocks.

But as were doing these things we were strengthening those muscles that helped make CLEAR sounds then CLEAR words.... Mary also had us use some time each day to look at and talk about facial expressions. To help her see and talk about feelings associated with the faces. When you have been afraid of life for so long as Elizabeth was....and when you can’t hear as clearly all the time, it is difficult to discern emotional expressions. It was kind of fun doing this with her. To play act the emotion. And it helped Elizabeth to talk about feelings and emotions and to know that EVERYONE feels all the things that she feels.

These additions to our already rather full follow-up therapy schedule was hard, we were already working on a number of things so adding more was difficult and the very fact that we needed Elizabeth’s cooperation to accomplish these new ones made it difficult Elizabeth was still being brushed to help with her SPD and she appeared happier than ever but.....those sensory issues can rear themselves when she is stress and I can remember quite a few tears as we worked our way through these new sessions. But what kept us motivated was knowing that what we were doing was not just teaching her newwords but helping her mouth and its muscles be stronger for life.

Dyspraxia and these sensory issues just do not let go....but we now had a plan to address this oral component of her dyspraxia...we had new and a bit tougher work to do and we had the idea placed in front of us that preschool may be a good fit for Elizabeth. Quite of few new things are in front of us on our journey...the path twists and turns a bit but we are seeing good things...our journey continues......

-Michele

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