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.

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.

It is funny or maybe not funny, but ironic that with a special needs child all the things you have in place and are working one minute can become things that need changed and adjusted the very next. I know the same can be said for life with typical developing children as I have two also, but the sheer work involved with finding the next right therapist, therapy or “piece of the puzzle” can make these changes for special needs children seem overwhelming.

With that little introduction in place, allow me to introduce you to a year in our life that had so many of these changes, in such a rapid fire type way that even I, when rereading my book about this year, closed the book and thought “WOW, that was one BIG year”

I know I left off my last blog with the statement that all was very well, we had a bit of an oasis. Yes, we did but then ....life stepped in. Elizabeth was quite happy with her new routine and her home school teacher at the end of the first year and with that in mind, we planned some fun things for her and the teacher to do when school resumed in the Fall. Such as trips to the museum, libraries, art classes and more. As of September, Elizabeth was also attending her old preschool for the socialization part of her needs. And we found a Kindergarten program that was associated with a school in our area and had classes three mornings a week at a local church. So the Kindergarten used state curriculums and the like but had a less stressful feel as it was in smaller classrooms in a church. Elizabeth had speech also and we, of course, continued our work with Mary for her sensory and dyspraxic issues.

It was a busy, full schedule but Elizabeth loved each part and each part was different and necessary. I think John and I felt that her current schedule was meeting all of her therapy needs as well as her need for socialization and the one on one education that was needed.

I guess I knew that, historically speaking, our oasis would not be a forever thing, but I DID think, I would be able to see the signs of a need for change and be strong enough to deal with what we needed to do for Elizabeth....but I did not and was not.

Let me explain. The problems started out so slowly. September went well but then it all started to unravel... First Elizabeth would look very uncomfortable when she went to “school” with her teacher. Which was, for those who have not read my book, upstairs in our spare bedroom. I thought perhaps she was reticent because she liked being with other children at preschool ad Kindergarten school and not by herself. This feeling of being uncomfortable turned into Elizabeth saying that she did not like her school time . While it was great she could articulate this to us, she was still unable to truly express and answer to the “W” questions. Why?, where?, when?.... So with that issue we could not truly understand what she was feeling. I could see anxiety and while she expressed a thought, we could really not get more than that from her. So we talked to the teacher a great deal. It turns out that Elizabeth had been showing some issues in the room, such as shutting down and showing some sensory defensiveness in the classroom. We talked about ways the teacher could help Elizabeth, the teachers feelings and ideas of things to do when she was showing these signs and we developed a reward system for Elizabeth to help motivate her.

Even as I type this now, I can remember feeling remotely sad at the moment of this conversation with the teacher. I was sad because it was like we were back at that moment when you, as a parent of a special needs child, realize just how challenging your child’s disorders are and that you are now facing yet another road block or challenge to your child’s success....and if I am truthful here, I really wanted to make this work. I thought of all the hard work we had done to put this schedule and places in to play and truthfully, I did not want to have to make another round of changes. I pushed away the sad feeling and replaced it with some determination to try our best to make this work. The one thing that I will share now is that ...no amount of MY determination, can change the disorders of SPD and dyspraxia. No amount of MY determination can change the fact that some things can’t be fixed, they must be changed.

If I had to turn our attention to the good parts of this year...I can share that she was enjoying her preschool time to socialize and she was fitting right in with a new groups of children at the Kindergarten program. She had her desk, supplies, a very cute classroom and a teacher who was willing to listen and work with Elizabeth’s needs. And I guess on a very superficial layer, Elizabeth also had some very cute outfits for her school days! That is one thing discovered during this year, Elizabeth loved to pick out her clothes. I would show her outfits and she would decide what she liked that day. I think through all the years of work and therapies, it did not really dawn on me that she would want to do this or that she would be interested in clothes. I was so busy getter us out the door and through a therapy, that pretty much clothes and their colors did not matter as long as her clothes matched, were clean and without an obvious flaw, we were good to go. But, I did learn quickly that Elizabeth, loved pink, purple and yellow, NEVER dark blue or green and she loved dresses way more than pants and there was one set of shoes, she simply would not wear. I believe she called them “ugly”. What a true treat it was to discover something more about my daughter and also, what a treat it was to shop with her and have her have an opinion and choice....yet another beautiful piece of Elizabeth to add to the ones we have discovered before.

So, with preschool and Kindergarten going well, I need to say that our work with Mary was continuing on the same as before. With the work stressing around the oral motor work as well as, once again working on clarity and and sentence length, thinking language and the body work. All of which are serious work. With that said, we began a new speech therapy that was to work on articulation or clarity of speech. Elizabeth went once a week and we did the follow-up at home. This therapist was so genuine and kind. I can remember her asking me all about Elizabeth and her disorders. She told me she had never worked with these disorders before but she was excited to try to help Elizabeth. This therapist proved to be worth every word.

So we now need to rejoin the homeschool story. Something our first OT had said I need to pass on now. It is was that children with SPD, need to end any and all experiences, if possible, on a good or successful note. As they will remember the last association made with the event. Meaning, if there is a struggle, a fear, a bad outcome to an event. They will forever remember that association and as such will come to that association even years after the event has occurred. I hate to say that the association of discomfort and negativity had been made by Elizabeth regarding the homeschool area. It had also been very well embedded as we tried to make the situation work. I referenced earlier that I wish I had had the true vision to recognize the problem and the strength to make changes, instead, I let time pass and tried to make this situation work. All that I succeeded in was making Elizabeth more anxious and the homeschool teacher more frustrated. It came to a point were we simply had to change. I do regret not digging a bit deeper for strength prior but I learned a lesson and made a silent promise to my daughter that if there was a feeling in my heart that something was wrong I would never ignore it again....thus far in life, I have kept that promise. This teacher and I had a long talk and as much as she helped Elizabeth and guided us initially, we both agreed it was time to move on. So we did.

We found a new tutor who was certified in special education, who was actually recommended by and a relative of our newest speech therapist. We met this new addition on a Spring day. Elizabeth was quite nervous to meet her. I could see just how strong her negative association of a teacher and the schoolroom really was. I will be so happy to say...that this new teacher...knew how to gently guide this nervous child to a calm place. As time went on the calm place became a happy place then to a fun, exciting, wonderful place. This wonderful person is still in our life only not only in the capacity of a tutor but a wonderful friend and honorary member of our family.

Our new tutor worked with Elizabeth for a month or so and then posed the next question that would bring about the final change of what has been quite the year. “ I think Elizabeth should go to traditional school next year. She is ready.” This WAS something John and I had thought would be our path but perhaps now was a good time. After all, and as our tutor thought, she was loving the children at school, able to do well with instruction and was going to be tutored in adjunct to anything taught in first grade. Well we thought about it and decided to sign the papers to have her tested. The testing was done, the IEP meeting was held, the plan was in place for which classes were mainstreamed and which were to be in the intervention room. The start date was September. Here we go on another leg of our journey.

I look back at the start of the year and then look at where we ended up and I can only say that I would have NEVER guessed that our journey would take us here but I learned more about life with our special needs child and it was called “ life and Elizabeth’s needs will be ever changing.” Our ability to adapt and change, grow and learn, fall and get back up instilled in us a belief in our own strength and in the strength of our daughter. Dare I say we ended the year in a calm way? Or perhaps best to say...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.