You know the feeling of the first few weeks of a new school year.  There is the shopping for backpacks and school supplies.  Clothing and shoes and if you are like my son, a great number of very specific shirts.  Even if your child is in a preschool setting, there are still so many things to get and do.

And once you accomplish them, once you get their new schedule and they are on their way, you breathe.  Right?

Right!! …….for about 30 seconds.

And then comes the homework, after school sports and classes. The“Hey Mom, where is my (insert name of lost object here)?” or the “Mom, did you know class pictures are today?”  Yes, it is all there!

For those who have all the above fun stuff (and I truly mean fun, because those crazy, busy moments are what life is truly about), and a child with special needs, well!  You are managing therapies as well as all that after school stuff.

It really is a balancing act because you know you have to keep up with the therapies for you child but you know you want to do those sports or lessons with all your children as well.  But how do you make sure that you are keeping up with it all?

I thought I would offer some thoughts out to those who have 17 balls in the air this Fall.

Sounds simple right?  But sometimes in the heat of the moment, you say: Sure, I think that karate three nights a week would be fun.  And it probably will be, for about a week or two.  But then you realize it is 25 minutes there and back, and then there is a therapy one night that you now see you will have to move, and then the therapist can’t do it the night you can, and so now you are double booked, looking at your child in his karate outfit and you watch at the same time.

So best to get a calendar and really think, marking down the WHOLE time it takes to accomplish any afterschool activity.  And mark down the therapies…all of them.

Then look and ask yourself…can I do this schedule in a month?  Two months?

I am SOOO not saying to do nothing but therapies…No, No, No, Just that sometimes it helps to remember that therapies and life with your special child as well as typical siblings if that is the case, is a marathon, not a sprint and as such, bursting out of the gate may feel great but really cannot be sustained.  And you want to have your child(ren) both typical and special needs to have the chance to do these things long term.

So an exhausting schedule will take its toll pretty quick.  And if you think I am not talking from experience, I will happily share with you my Fall of 2003 as a prime example.  I think I am still catching up on my energy from that time.

I always wanted Elizabeth’s sister, Emily to have choices for her after school times.  Elizabeth would come with us.  I always tried to have something to do with Elizabeth that was “work.” For those who have read previous blogs from me, you know “work” is my reference to any homework given to me by our therapists.

So I would plan what I would attempt to do with Elizabeth while we were waiting for Emily:

• Maybe it was to bring her speech folder along and go over sounds
• Maybe it was to look at a magazine and have her try to name new things and verbally highlight sounds.
• Maybe it was talking a walk around the building and stomping our feet for sensory input or twirling her as if we were dancing.
• Maybe practicing cutting or coloring or even spelling their name of a wipe off board.

I am using some easy examples here but the offering is that this time, while occupied for one can be open homework time for your special child.

Just remember to tell your child what you are planning to do, this way they can anticipate correctly.

Yes, I said it ….enjoy.  Time passes quickly and to enjoy all moments is a gift.  We are 19 years in on our journey with Elizabeth, and I can truly say we tried to enjoy all the good that we could.  So even the crazy times have those really good moments.

Good luck with the start to all the new school years.  I wish you peace.

-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.

It is funny but just as soon as you get used to something, that something changes.  I am sure everyone can sympathize with that, right?  Well, this is how I was feeling about Elizabeth’s new school year, her last year in elementary school.

I had managed to figure out a few things: 

• How the school worked
• How to advocate for her needs
• How to make sure all the IEP goals were met
• The things I needed to do each day to keep communications open
• The need for me to visit the school for monthly check-ins

And suddenly, we were looking at our LAST year in this building.   Our last year with this group of aides and intervention specialists….it almost made me scared for the next step.

Being a person who likes control, (I am continually working on this part of my personality), I felt frightened of the next step for Elizabeth, middle school.  At the same time, I felt excited for the next stage of her life and the new challenges that awaited her.

Elizabeth’s fourth grade year was actually quite smooth. I was able to continue my monthly check- ins, incorporate the goals of the IEP into our school work at home, and communications between the school and our home were flowing quite well. I was so proud of Elizabeth and how well she was doing in school.  She had gained confidence in herself and her social skills.  In fact, I received many notes home regarding her gains in social skills.  Those notes made us all feel proud and excited at the same time.

We continued our work with Mary that included asking more thinking, open ended questions such as: “How do you think you should act in church?” as opposed to the previously asked “Please behave in church”, or “Let’s talk about the things you did properly in church”  as opposed to the ever present “Elizabeth, please use good behavior”. I learned that the thinking language was the next step in her growth, as it allows for her expression and language and it is not led by my words. We also continued the oral-motor protocol from before, even if she was not the happiest speech student to participate in this protocol of oral stimulation.

Something new to add to our daily lives was the realization that she is a “tween”, and as such some topics and concerns need to be addressed.  As children progress to middle school, the thought of puberty and all it brings does cross one’s mind.  Something to keep in mind with children with dyspraxia and SPD is that talking about new things early and often is the easiest way to introduce things.  And if you can do this talking BEFORE the time you might be needing them to act on this information, you will be more likely to have success.

With this in mind, Mary introduced a book to me titled “Taking Care of Myself” by Mary Wrobel.  I would quite highly recommend this book to anyone with children at the crossroads of their lives. The book is easy to read and understand, easy to discuss, and full of pictures for visual learners. As you can see, our work with Mary has changed a great deal.  Gone are the gross motor exercises and the work to get any sounds made, and in its place are the higher-level thinking questions and the focus on the typical areas of a middle school child.

It is so hard to believe that Elizabeth is a middle schooler.  It is so hard to believe how far she has come and to believe that our crying, scared, blue-eyed infant has grown into a confident, happy, bright-eyed tween.  As I say in my book, “Middle school, here we come!” Words cannot ever truly express the depth of our love for this special child or our belief in her or even our thankfulness that she is in our lives.  I know those who have a special needs child will understand and may be nodding their heads right now.

For those who have read my book, you will know this is technically the end of the “journey” covered there.  For those of you following my blog or my Facebook page, you will know our journey has continued and Elizabeth is now 18 years old. I look forward to writing future posts about Elizabeth’s life past those covered in my book, because we all know ….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.

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.

My name is Michele Gianetti and I am a mom to three wonderful children, gifts from God is what we call them.  But our second child Elizabeth is the one who changed our world the most.  She has special needs…specifically Sensory Processing Disorder (SPD) and dyspraxia.  Our family has been on quite the journey since her birth in 1997.  She has made amazing gains in life, I wanted to share our story, advice and thoughts and help others so I wrote a book about her life titled: I Believe In You: A Mother and Daughter’s Special Journey. The book’s title are the very words I have said to her everyday of her life since she was one year old.  Please visit my website to read more about her life: www.michelegianetti.com  I am excited and thankful to be able to write a blog each month for TalkTools.  I hope you like them.

So many times we plan out our lives, we think we will do this on Thursday, and that on Saturday.  We think into the future, planning our vacation way ahead of time to make sure we get good ticket and hotel prices. We plan with the hope of being able to control our lives or at least some part of them.  But sometimes in life you learn that no matter how hard you plan or schedule or work, you may find yourself somewhere you never wanted to be and facing obstacles you never planned to face.  Even wishing for the things you never thought you wanted and realizing that some things you thought were important are simply not.

Those feelings are not new to me, as we have been on our journey with our daughter and  her special needs since birth 16 years ago.  Her path in life was not one we planned for, prepared for or thought we would ever be on.  But it has brought us many gifts, those you cannot wrap in a box, it made us stronger, better and has changed us completely.

My second daughter’s name is Elizabeth, she is beautiful, loving, funny, complex, caring, kind.  She has a great laugh, a great smile and gives one of the best hugs you can find anywhere.  Those things I just mentioned are ones we treasure more than the biggest gift in a box.  You see Elizabeth was born with Sensory Processing Disorder or SPD and dyspraxia.  Both disorders showed themselves shortly after birth and have affected her life each and everyday.

SPD is a disorder that affects how her nervous system takes in sensory information and turns it into the appropriate motor response.  All sensations felt wrong or offensive to her and as a result she avoided them.  She did not like the feel of shoes or grass, she did not like baths or the bright lights in a store, food had to be a certain texture, she refused food that was not thick enough and on and on. Occupational therapy has become a mainstay in her life.

Dyspraxia is a motor planning disorder that affects one’s ability to plan the steps needed to perform a task and/or the ability to perform the sequence of steps necessary to complete the task.  It can affect thinking, and processing of information as well.  These motor skills that can be affected include: gross motor skills like running and jumping.  Fine motor skills like writing or cutting and oral motor skills like swallowing and talking.  Elizabeth’s dyspraxia is global meaning it affects all of these areas.  Her dyspraxia made it hard for her to swallow…she spit up an ounce at least during each feeding, to chew, to move her lips and tongue and to talk. Speech therapy, and the use of equipment found at Talktools helped us to hear her first real words at five years old.

So much to tell, so much to share….I hope you will enjoy reading our journey in the blogs each month.

June 29^th at 12:55 p.m.  Into this world was born our daughter Elizabeth.  With her first cry…our journey begins...