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.

Learning something from a previous experience or mistake is a common thing in life.  We all do it.  But putting into action what you learned may take more effort.  I think this is common as well.  As I left off on the last blog, we were exiting second grade and a year that proved full of lessons.

I can remember how happy I was to be in summer that year.  It was refreshing to be out of the school schedule and all the feelings that I had amassed related to the school.  Elizabeth was ready for summer, and I was officially leading the parade out of the school for a much needed chance to relax, regroup, and plan for next year.

But before we visit the school year, we have to talk about our summer.  As I said prior, Elizabeth has a summer birthday, so this year she asked us for a blow-up water slide for her present.  We had seen one in the newspaper, so we got it, put it up, and watched our sensory child have the time of her life climbing this wiggly, wet, cold monster and sliding down about 1,000 times that summer.

The only small problem we had with the slide was that she was a little too encouraging of her toddler brother in his attempts to climb the slide to have his turn.  We had to explain many times why Michael, although crying to try it, was not to be pushed up the ladder to help him get to the top.  In any event, the summer was really fun and a nice respite from the stress of school.

But we all know that all good things must come to an end. Soon August was in front of us, and with it came the awareness that school was on the horizon.  It was time to plan how to handle the third grade year.  I decided the following:

• Do not assume that information about Elizabeth gets to everyone, do it yourself.
• Do not assume that work is getting done for Elizabeth, visit the school once a month at least.
• Keep a daily communication notebook and express any and all concerns on it.
• Do not be afraid to ask for something for Elizabeth when the need presents itself.

Now I had a game plan and was quite happy to find out we had a very cooperative and kind inclusion teacher.  I communicated Elizabeth’s needs and strengths to her as well as talking to the intervention specialist prior to school starting, and we arranged meeting times.  The communication notebook was ready.  Check, check, check!

All the parts of Elizabeth’s day were going well.  The communication notebook was so helpful in keeping up with her day to day feelings and activities.  So I was enjoying the positive changes….

The thing is, when you have a child with special needs, these needs are dynamic in that they change.  And sometimes, they change quickly and without warning.  One day she came home happy and chatty, and the next day she came home quite angry and stressed.  This went on each day and she seemed to get a bit more stressed each day.  It was like she would JUST make it in the front door before she would meltdown.  Every day, the same way.   So I:

• Checked the notebook
• Talked to Elizabeth
• Wrote notes to the teachers
• Even visited the school

I was told nothing was wrong at school, so I knew that these were signs of her sensory issues resurfacing, and that she needed some calming activities or brushing to help her through the day.  This was a new twist, because she had never needed this before during a school day.  I wanted the school to brush her during the day and thought about telling them individually about our request, but then I reasoned it would be easier to talk about her needs fully at the upcoming IEP meeting.  We had an IEP meeting set up for fall to sign the new IEP.  I envisioned that I would talk about her sensory needs, make a plan to accomplish this, and then all would be well.

Yes, that is what I thought would occur.  I never thought I would be met with any resistance.  Yes, I heard it even as I wrote it. Just how naïve and trusting I was early on!

The meeting went like this:

• Our therapist, Mary, and I talked.
• Our private OT, tutor, speech therapist and I talked.
• We made a plan of who would be at the next meeting.
• We contacted an advocate
• We made a plan for our requests
• We fought for our daughter

I am happy to say we got the sensory diet and oral motor protocols put into her school day. But there were some casualties by the roadside for sure, such as many bad feelings and changed relationships.

But why the fight?  Aren’t we all really on the same side? And that side being FOR the child? I offer out all these experiences, because so many people are just beginning their experiences within a school system and maybe by reading our experiences, they will gain strength in their own advocacy for their child.

The remainder of the year went like this.  I would visit the school every three weeks to check in.  I made check off sheets for the teachers and speech therapist to use to show that both the sensory diet and oral-motor protocol were being followed.  Between the sensory diet followed at home and the one at school, Elizabeth’s system calmed down and she no longer arrived at our doorstep in the overwhelmed, angry fashion.  She was able to enjoy her school day feeling calm. The things we were asking for were what she really needed, what her system really needed to function.

Now that we had a sensory diet in place, we hoped all would be well. Our IEP stated when she would have time in the inclusion class, but as the year went on, we noticed she was spending more and more time in the special education room and less and less time with typical children.

For those who don’t know, Elizabeth is one of the sweetest, kindest, most gentle, and extremely social people you could ever come across. But the truth is, she does need extra support in her school day in the form of reminders, encouragement, and understanding of how she works.  So during one of monthly meetings I asked why this was.  I was told:

• She sometimes looks overwhelmed.
• The inclusion class is working on a project.
• We have something we need her to do in the special ed. room.
• The work is too much for her in the inclusion class.

We were unhappy in this area, as we wanted Elizabeth to have the chance to be with and learn from typical developing children.  We knew that the content of the classes needed to be modified for her, but being in these classes would do many things:

• Give Elizabeth a chance to learn how to act in a typical classroom.
• Teach her how to engage in group projects.
• Allow her to feel like part of the class.

We did not pursue this point with the school this year but had plans to focus on this issue the following school year.  For those who have children in a similar situation, you may wish to be alert to the time your child actually spends in the inclusion classroom.  My hope is that what is on your child’s IEP is actually being done.

The year wound up with a very positive occurrence, Elizabeth was voted student of the month by her classmates.  It is an award that not everyone receives, and she was the student of the month for April. I am sure when it came home, the neighbors three houses down in either direction heard my happy screams!

So much good is coming for Elizabeth in her personal growth, talking, and social abilities.  We have always believed in her abilities, but we had to work to understand her disorders. We leave the year feeling like the school understands her disorders and even Elizabeth.  This is a good thing.

We leave third grade and head to fourth. I will put the “to-do” list away for the summer and focus on fun, sunshine, and keeping Elizabeth from succeeding in getting her brother to the top of the waterslide.

As ever, the journey continues….

-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 left everyone last month by saying that Elizabeth was going to school!  What an accomplishment for her and her strength. Yes our little Elizabeth is in school.  Everyday of every week she is in school.  She has a great intervention teacher and a very nice inclusion teacher.  The inclusion teacher is the one who has all the typically developing children but whose room, it is determined, will be the one Elizabeth uses as homeroom.  It is in this room that they have circle time, morning meetings and all parties. Elizabeth also has an aide that she will share with four other children.  The thinking behind this was that the aide would be there for her when needed but by the number of children she was to help, it would encourage independence in Elizabeth.  All was in order…it was quite official, she was a member of our school system.

Something that I think is amazing in this journey with Elizabeth is the number of feelings I can have in the course of a single day.  I can rejoice, worry, pray, feel relief, feel her pain, feel immense love, wipe away tears and fall on my knees to thank God for his grace.  Some feelings can take your breath away with their sheer strength and some can be simple little tugs on your heart that go away after a bit.  But one feeling I was NOT ready for was the one that accompanied the huge milestone that Elizabeth just achieved.

I was not ready for this feeling of loss. It was not a loss in the typical sense, where you have something and then it is taken away.  In my case, I think it was the feeling of a loss at what could have been.  Here I have this wonderful child so trapped in her disorders that finding her took so much time and effort, then as we continued to work and achieve, time continued to pass.  Just as we see the true Elizabeth, the one with the bright eyes and easy laugh, she is at school age.  With a bit more work, we feel she is ready to head into the school and LIVE.   And just as I see her head into the school, I feel, so empty.  It is like I guess I thought that we would have some time to simply BE.  To have Elizabeth in a state of calm and happy at a time that would allow us to enjoy those special times that you get when your children are young and are all yours, with no real accountability.

It hit me pretty hard that we did not get that gift.  We did not get those quiet times, those quiet mornings to sit together with no where to go or really nothing to do than just share time.  We worked and worked and so many wonderful gains were made so wouldn’t follow that I would simply be happy.  I would have thought so, but I guess it finally dawned on me that I was simply NOT going to get those times, that my time alone with her was done and that she was moving on in the world….and I felt quite cheated.  Again, the very thing we had prayed for had come to be, but it brought with it some feeling that were hard to deal with.

Something that helped me through these feelings was seeing just how much Elizabeth loved going to school, being with other children and doing what it is that children SHOULD be doing.  The typical kid things…coloring, singing, eating in a cafeteria, recess, and so much more.  Seeing her smile and laugh about her day helped, seeing her pick her outfits (SO MUCH PINK!!!) was fun, (She even used my perfume each morning resulting in two teachers asking my what makes Elizabeth smell so good),  doing homework with her was a novelty.  These good things helped me take the focus from me and put it once again on Elizabeth.  This was where she needed to be and wanted to be. When I think of Elizabeth just a few years prior, and mentally see the child who cried all the time, whose eyes looked so afraid and who was unable to speak a word, we can respect just what a huge accomplishment this is.

I like to think of Elizabeth as a work in progress. Because with her disorders, she will always be working on a new goal or skill.  And also because of her disorders, it is vital that those working with have an understanding of her disorders, how they affect her and how to work with her.    It was at this time that I started what I like to think of as my internship on this thing called “advocacy for your child” I had quite little experience being her advocate with educators in a school system and like in all internships there was a great deal of learning to do.

Something that I learned that year was to listen to your heart and follow what it leads you to do for your child.  By this I mean that I learned that I know my child and her needs the best and it is up to me to advocate for her and her needs.

Something else I learned was that communication between us at home and those working with Elizabeth at the school became critical to Elizabeth’s success.  Hearing how her day went, the good and the struggles allowed us to share thoughts and ideas to help Elizabeth.   Something that I learned and I advocate for to this day is to think of the school and family as a team.  NOT two sides that work separately but two parts that should work together for the good of the child.

I learned all these things and more throughout this first year.  I learned to be strong.  I also learned that things in a school system do not always come easy, that attitudes and opinions can cloud good judgment that sometimes you need to be stronger than you ever thought you would have to be, that you could be so thankful to an educator for giving that little extra bit. I also, once again learned just how strong and amazing Elizabeth is.

Yes, she went to school!  A simple declarative sentence, but really is so much more.

A beautiful child, happy at school, happy with her world, who a few short years ago could not have managed to put shoes on or leave my side, heads down the hall each morning to class, carrying her lunchbox and wearing her signature pink color and the perfume we have shared for years.   She is a little young lady.  We are proud.  Simply we love her… I can’t help but wonder what the next step of our journey will bring……

-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.