So many parents, at this time of year, find themselves throwing out old notebooks, half used crayons, semi-dried-out markers, ripped folders all with the excited feeling that it is summer! Time to just relax. Right?

Well, if you have a child with special needs, that time of sheer freedom does not arrive in quite the same way.

True, you have a bit less of a rigid schedule, a bit less to prepare for each day, but to simply throw out the old school stuff and grab a magazine, lawn chair and plan what to grill for dinner is not how it plays out, at least in my experience.

If you ask anyone who knows me what I love the most, they would answer when my children are home. So of course, I greeted summer with a happy heart, and of course I tossed many a backpack into the corner of the hallway, but then I turned my thoughts on how to make summer fun while still meeting the goals and needs of Elizabeth.

So how did I do it and truthfully continue to do it?

Well, I think one thing I do is to spend some time thinking about some of the goals from Elizabeth’s new IEP that I would like to focus on during summer. And since we adjust her IEP in the Spring, I could use it as a bit of a guide. Once I have some ideas I try to visualize how I can slip them into the day.

Then I think of the things I wish to put into our everyday schedule, like instead of the TV in the afternoon, we would have some music time or some quiet reading time. For those who are younger, we would color or do play dough. Just something to calm ourselves, especially Elizabeth who needs this calming time, and to take a break from the “go” of the day. This is usually around three or four in the afternoon.

We also build in a bit of rest time. So after lunch, we all go to our neutral corners to either watch a video (them, not me) or rest (me, not them).

Of course, there are trips to the park, pool and friends’ houses in our days but I like having this loose structure because then you can build in the therapy play around it.

Something that I think is important is to know that therapy can be built into the play or activities of the average day. And this holds true for speech therapy as well. It’s just that you have to see each thing you do as a potential learning time and/or find ways to incorporate therapy without making it a “therapy time.”

For example, something we did to help with Elizabeth’s oral motor work was to blow horns. We would get a number of different ones like the ones of TalkTools Original Horn Kit.  We would sit on the driveway, put a CD in the player and have fun blowing horns to the songs. I would encourage deep breaths and proper lip placement but after that, it was just fun to do this. Emily, our oldest, loved it too and she and Elizabeth would especially love Horn #4, that has the little spinney thing on top.  So we actually bought Emily her own set of horns to use to eliminate any fighting amongst the ranks.

So see, you get the oral motor work, breathing, fresh air and all the while it is fun.

Something else that is fun is to be on the driveway or deck and to bring out the bubbles.  We used to have the largest supply of bubble soap in the neighborhood and ours were even scented! Anyway, we had big wands to use standing up and this would work her whole body to turn and twist and to run after the bubbles to pop them. Then we would use TalkTools Bubble Bear to have her work on her ability to blow bubbles. The face of the bear made it fun. I would actually look forward to this because it was simply fun … but still therapy. One caveat is that you need bubble soap that makes good bubbles, like TalkTools Bubble Refill. This instant gratification is critical when a child is working so hard to make it work.

Even when bringing your child a fun, summer drink, remember that using certain straws, such as those of TalkTools Straw Kit, will help work with your oral motor goals.

If you are working on language skills, remember the rides in the car are great places to talk, to use descriptive language as you do errands, to ask questions of your child and to help verbally highlight words they may say incorrectly.

If your child needs help with knowing left or right, this can be worked on when driving as well.

For those times when more concentrated work needs done, say with oral stimulation like with Toothettes or lemon swabs and perhaps some work with letters or words, I have found that a visual schedule is so very helpful. It lets the child see just what you have planned for the session and allows them to see what comes next. Which will hopefully help with the transition from one thing to the next. And in the case of Elizabeth, knowing when she was DONE was huge to her.

I made my own schedule chart but one that I love and only wish I had when we were early on in our journey with Elizabeth is the TalkTools Schedule Board Kit.  I offer that using one of these is something that is so worth considering.

There really is so much you can do, these of course are just a few that we did. Maybe they will help get some ideas flowing. Please feel free to comment with questions or additional summer speech therapy schedule ideas below.

I wish everyone a happy, safe, productive summer. Ours begins tomorrow and I will again toss a backpack or two and then look to having a fun time as Elizabeth and I begin our 18^th summer together.

Blessing to all.

-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.

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.

Elizabeth is one of those children, lucky or unlucky, depending on how you see it, who has a summer birthday. These children get to wake up and automatically be off on their birthday, go outside to play, and enjoy their day but they don’t get to celebrate their day with classmates in the form of birthday treats brought in, singing and signed construction paper cards from everyone.

Children like Elizabeth fall into the “Half-Birthday” crew. Where you can bring in a treat on the day that is exactly six months from your actual birthday and everyone will sing to you. We did not do that but many children do.

My son Michael insists that it is great to have the opportunity to celebrate “half-birthdays” but I secretly think it has more to do with him enjoying the number of treats brought in versus the actual sentimentality of the day…anyway, with Elizabeth having this Summer birthday we decided to make it a big one this year.

So on a beautiful day in June, we had bouncy castles and slides delivered, friends over and a rather delicious mound of cupcakes to enjoy. The party was to celebrate the day she arrived on this earth as well as the year she just accomplished. And it lasted all day!

Elizabeth was the happiest child on the face of the earth that day and those memories are safely tucked away in my heart and mind. We moved our way through a great summer and were riding the wave of happy for as long as it lasted…

The wave officially ended upon entering the school for the start of second grade. It was not that Elizabeth was upset or overly anxious. It was a combination of a few factors. One big one was that our inclusion teacher, the teacher whose class is picked to be the one as homeroom for the special education children who are being mainstreamed did not truly wish to be “the one”. She was less than happy to be in this capacity. I could tell by talking to this teacher and seeing her in action.

She had the inclusion children placed in a small group of desks off to the side of the classroom, very clearly making sure they were away from the typically developing children. Her demeanor was never mean, just conciliatory, as if she was just accepting that fact that these beautiful, special children were in her room, not trying to include them or encourage them to engage with other students.

Elizabeth would be with this teacher for everything but math and language arts. It was kind of hard to be part of this class as my hopes for Elizabeth included her being with typical children, to learn from them and to enjoy all that a typical classroom has to offer.

The other big factor was that the goals on the IEP were eerily similar to the ones on her first grade IEP. In other words, where were the goals that reflected the growth she made last year or even into summer? I was not entirely sure how to fix this as I was quite new to both IEP’s and school related to Elizabeth.

We had an evaluation with Mary our beloved therapist in October and it was at this point that I brought up some of our IEP concerns. When I brought them to the school, these concerns were mostly dismissed and by the time we really discussed them it was at conference time in November.

Even as I write this I cringe as November is in essence January. Because once you hit the holiday time on a school schedule, so many things happen at the school that adjusting goals of an IEP let alone changing the whole attitude of those working with Elizabeth, would simply fall to a place behind holiday programs, shopping with Santa, and the general holiday glee found in most elementary schools. And once you hit January, nearly half the school year is behind you. So the combination of these two factors led to my feeling so uneasy most of the year.

Why didn’t I push a bit more? A better question is why didn’t I KNOW to push a little bit more? This is due, I am sure, to my being quite the novice at this whole IEP process. As well as, how to be an advocate. But, to watch time passing and the attitude of those working with Elizabeth to be one I would term almost acceptance and lassitude, versus the one I have of “let’s go and raise that bar”, was so very difficult and frustrating. No one was ever unkind, but we seem to be quite far apart in how we approached the goals for Elizabeth.

Elizabeth was still working on achieving longer sentences and clarity. We would do the work from Mary at home, including oral stimulation done prior to the speech sessions to kind of “wake up her mouth”. The work was not always easy to accomplish because she was becoming tired of the oral motor work as well as being fatigued by the demands of a typical day at school. But still we worked on these goals.

We tried to work with our speech therapist to have her do oral stimulation with Elizabeth. We asked her to use mint toothpaste or lemon glycerin swabs to stimulate Elizabeth’s mouth prior to doing the oral stimulation with the Vibrating Elephant, purchased from TalkTools, and were told that she was not comfortable doing these things as Elizabeth did not always want to listen. I tried to explain her disorders to the therapist but she was quite reticent to try. We asked her to use the Jaw Grading Bite Blocks to help with her jaw strength and she said the school did not have these items to use. So, I offered to supply the school with the items.

It was quite the hard fought victory to have her actually try to do these oral-motor activities and as such, I learned yet another lesson. You may have to work quite hard to have the school truly understand your child’s need and then even harder to make sure they do all that is necessary for your child. I had such a hard time believing that this therapist would NOT do something for Elizabeth that was so necessary for her to continue getting clarity of speech. Simply put…lesson learned.

There were many lessons learned that year. I would say not too many were heartwarming, I learned to be more involved in her school days. I learned to communicate daily with her teachers. I learned an IEP is a working document and that adjustments can and SHOULD be made for the sake of the child and their continued success. I learned that settling back and trusting the school was NOT going to be in the cards for us and I learned that inserting oneself into the school at least once a month to check in things is quite essential. I learned that not every inclusion teacher is happy to be said “inclusion teacher”. I learned that even though we may raise the bar high at home, unless it is raised at school, the successes and gains of the child will not occur. I learned or should I say, I began to learn how to advocate for my child. You know how people talk about “sophomore slump”? I think we had a huge case of this.

I will say that through it all, Elizabeth continued to be the person she was before. Kind, sweet, caring and very well liked. I know she was blessed with the ability to kind of step over the negatives and continue to enjoy each day at school, being with other children and enjoying each day. These are the gifts that Elizabeth has.

The school year came and went in a fashion that I was ill prepared for. I wanted so much more for her educational and speech goals that year just did not come. Since the year would not be one in which Elizabeth learned a lot, I used it as one that I would learn from.

I did just that and when the year ended, I had a big, long list of things that we would address early in September, as Elizabeth would be entering third grade. As well as plans for me to meet with the teacher every three weeks.

This journey does not come with instructions and certainly does not come with a guarantee of success. We may have had a tough year but as the song says “what does not kill you makes you stronger” This year made me…stronger in my advocacy, stronger in my belief in my child and stronger in my drive to make sure all that could be done for her will be done for her.

The journey this year kind of twisted and turned but we anxiously awaited the chance to put to use all we learned.

Where will the journey take us next?

-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.