Tagged "Elizabeth's Monthly Updates"


How we deal with a special needs child on Thanksgiving

Posted by Deborah Grauzam on

Raise your hand if you cannot believe we are one day away from Thanksgiving, the official unofficial beginning of the holiday season.

I feel like I just shut my door at the end of Halloween and then … BAM, we are talking turkey, stuffing, days off and then ... gulp ... Christmas.

I try to remember what the holidays were like before we had our beautiful Elizabeth and I simply cannot. I try to remember what it was like before we had to wonder if the noises, lights, tastes, crowds and more, would make a fun time not so fun. And, again, I simply cannot. I think we have been on this journey with Elizabeth for so long that those previous times are kind of like in a vault somewhere in my mind. So as much as Thanksgiving can stress the most even-keeled of us, add in the challenges that are unique to our special children and like a good recipe for stuffing, you have yourself a recipe for a challenging day.

Think about it: the Thanksgiving holiday arrives just about the time the Halloween candy is still mostly uneaten, the leaves are still on the trees (it is Ohio) and the weather is kind of cool, not cold yet. See where am I going with this? There is no screaming announcement that this holiday is coming. It sort of creeps in as we start to see Christmas trees appearing in our stores and then it is THERE!!! Not only is it there suddenly, it is not typically a holiday that you can sort of attend.

- I mean on July 4th, you can go or not go to fireworks.

- On Easter, you can attend a nice dinner or schedule a lunch or brunch.

- But not for Thanksgiving!!! It is the big meal that makes it the very holiday it is. For those of you thinking “No, Michele, it is about giving thanks for all your blessing,” I will say “That is so very true and something never forgotten about the holiday.” But I am seeing it from the pragmatic point of view of how to help our children enjoy this holiday as best as they can. With all this being said, here are my thoughts on how to make Thanksgiving the best you can for your family and your special child.

It is ok to sigh first

I give total permission for any of us to simply sigh and feel all that we feel upon realizing that Thanksgiving is here. By that I mean: feel what you feel even if it is worry, dread or borderline panic or maybe simple joy. Feel it, do not deny it. I spent so many years pretending I was okay. I would squish down feelings of panic or sadness and pretend. How unfair to all. Me, my family, my husband and all those family members. Those same family members who could have supported us in these tough times. So feel it, talk about it, and lean on those who are there for you. You will feel so much less alone.

Make your plans

After you have allowed yourself the time to feel, now comes the time to make some plans. So many of us have the traditions that hold true no matter what. So know your families plans that lay before you. Do you have to be at Aunt Martha’s at 2:00 and your Godmother’s house for dessert at 5:00? And then somewhere in there you have to stop and say hello to your Uncle? Yes, those are the kind of schedules that, even as I write this, I have to stop and breathe. So as you look at the Thanksgiving holiday, truly think: “Can we do it all? Should we do it all?” and “How do we handle the things we cannot do?

I offer out maybe you can do it all, but will it be too much for your child? Will one successful dinner be better than several complete meltdowns?

I think that having a child with special needs should allow you to put aside the “shoulds” in these situations and do the best you can do. Hey, maybe all will be wonderful that day and you can do it all. But why not be honest with everyone beforehand and tell them you will try your best and then feel no guilt.

Bring on the reinforcements

In this case I am not talking about a troop of soldiers. I am talking about things.

A DVD player and their favorite movies. Trust me, nothing is more scary to a mom desperately looking for a favorite TV show at a relatives’ house, than to find that they cancelled cable the week before and all you can put on is either an info-medical or a football game. Neither of which will work, trust me, I have done the leg work on this one. So having their DVD player and favorite movies can provide them a bit of downtime.

Foods that they like. I most definitely encouraged Elizabeth to try new foods, still do as a matter of fact. But the truth is, when they are stressed it is harder for them to eat a turkey made a different way. Or in our world, it was mashed potatoes that threw Elizabeth. You see I use the potato flakes. She loves them. Then we come across homemade ones, with lumps! Well she was done after the first bite. So we learned to encourage her to try food but to have favorites packed in reserve.

Their favorite blankets (weighted if needed). How nice to cover them while they relax a bit with a show and get some deep pressure as well.

A bribe. One of my fan favorites. In Elizabeth world, food was and is the currency of choice. So we would pick one of her favorites and have it with us to encourage her to try a new food, to sit at the table well, etc. I am not always proud of my bribery, but I have learned to live with myself ;)

Share some expectations

While you want to help them enjoy the holiday by doing the above, you also want to help them continue to grow and achieve. So talk to your child about what you hope to see in terms of behavior.

- Tell them where you are going.

- Tell them who you will see, about how long you will stay. (For young children, I would use a reference they could understand. For Elizabeth, we used to tell her we would be somewhere for about one show.)

- Tell them about the different food they will see.

- It is also helpful for you to teach your child how to ask for a break if they need it. I know this can be hard with those non-verbal children or ones that are too young. But perhaps you can think about this as a goal for the future but in the meantime, if they look stressed, offer them a break. I never did this, I just kept pretending I was fine and pushing Elizabeth to “hang in.” So, I know what I could have done better and I offer out the above from that place of past experience.

Now give those thanks

- If you see something your child did this year that did not last year: give thanks.

- If you know you are stronger now than last year: give thanks.

- If you are simply proud that your family is smiling: give thanks.

So many of the simple things in life, the simple successes can mean so much to those who have a special needs child. They teach us to appreciate the minute things in life. And to give thanks. Our children are precious gifts. Give thanks.

Wishing you all a peaceful Thanksgiving.

Blessings 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.

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Tips for happy trick-or-treating with special needs kids

Posted by Deborah Grauzam on

I know as child, I used to absolutely love Halloween. I loved the costumes, the idea of roaming the neighborhood in the dark with a flashlight, making plans with my friends to go trick or treating and of course the candy. Ask anyone who knows me and they know how much I do love my candy... But the point is that Halloween for me was and is a really fun time.

For so many children, it is a great time. So when Elizabeth (who has Sensory Processing Disorder) was younger it was really hard for me to understand why this holiday was, simply, not. For many of our special needs children this holiday is one that poses a number of challenges. Read on for 3 possible scenarii and tips to survive them.

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SCENARIO 1:

I can remember when words from Elizabeth were a rare commodity. We were happy she said anything, let alone the words ”trick or treat” on command. So on Halloween night, we would approach a door and Emily would ring the door bell and say the coveted phrase, while Elizabeth looked scared….or would make an attempt which came out something like “tic-teet” which, while cute, was quite hard to hear from my standpoint and totally confusing to anyone who was waiting for clear words. So we would, of course, fill in the blanks, smile as if we were totally fine with out five year old lack of language, and put the candy in her bag and YEAH! (sarcasm) head to another house.

WHAT I WISH I KNEW THEN:

That it is okay to explain your child’s lack of language. That telling your child what to expect and what to do during the trick or treat hours (even if they have gone before) is a good thing. That even having a card that says “TRICK OR TREAT” spelled out on it that a non-verbal child can hold up is okay, as it allows the child to participate in the event but takes away some of the pressure to be verbal when stressed.

SCENARIO 2:

We would plan great costumes. I am one of those moms that LOVES the idea of creating a costume. When they were younger, I would use the one day off we get in October (teacher’s meetings) to make costumes. We would look in magazines for ideas and then create. Elizabeth would look with us and together we would get an idea of what she liked or wanted to be. Good! Right? Flash to Halloween night. Tears about putting the dark shirt over her head. The dark shirt that she had tried on 700 times prior. The dark shirt that was essentially half of her costume or a black cat. The dark shirt that we had to abandon unless we wanted a full-on meltdown. The black shirt that was put on her bed as she put on her bright orange shirt with a pumpkin on it and was ready to go.

WHAT I WISH I KNEW THEN:

That sensory issues know now rules or boundaries. That in hectic moments, times when schedules are tight or when we are a bit focused on a goal, those issues can become more intense. Hence, the above scenario. That it is okay, actually, more than okay to make these last minute changes. It lets your child know that you understand them and their sensory issues. That trick or treating as a pumpkin versus a black cat is a success and: who was really going to know what they should have been anyway? Truth be told, I tried far more times than I should have to get that darn black shirt on her…

SCENARIO 3:

Emily tells me that she wants to go trick or treating with three of her friends. My neighbor tells me that her kids are headed to another neighborhood altogether to go trick or treating. And my eyes go to Elizabeth, who at the age she was, could really have gone out with friends and been fine, if she did not have her special needs. So how do you make this situation work? I will tell you: it is NOT by asking your oldest child to take her sister along…ok, maybe that is what I did. And it did not go well.

WHAT I WISH I KNEW THEN:

That it is okay to make the plans for trick or treating earlier than most. This would have allowed me to make sure everyone had a plan that worked for them. That even though Elizabeth, age-wise, was ready to go with friends, her disorders make her act younger and have a bigger need for supports in situations like this to stay safe. That it is okay to address her needs as such. For the record here: The next year we asked one of her buddies (older) from school to go with her and her friend.

***

Over the years, Elizabeth has grown to not just like trick or treat but to LOVE it. From the costumes, which she will pick herself and wear, to the canvassing of the entire neighborhood. We have learned from our earlier attempts and still put supports into place.

This will be the first year that we are going to have her hang up her trick or treat bag and have her stay by the door with me to pass out treats. She will look longingly at the street, I am sure. She has had some amazing Halloweens under her belt because we learned how to make them work for her and her needs.

Every child is different, every child has special things they like and dislike and ours are no different. Knowing your child is the key to success. I wish everyone a safe, fun Halloween and please know, that Elizabeth will be happily munching on candy as she waits for those little ones to show up.

Happy Halloween everyone!

-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.

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How to plan afterschool activities for your special needs child (and their siblings)

Posted by Deborah Grauzam on

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.

TalkTools | siblings 

TalkTools | afterschool activities

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.

TalkTools | afterschool activities

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.

TalkTools | afterschool activities

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.

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Back-to-school & IEP tips

Posted by Deborah Grauzam on

I looked my 10 year old in the eye just yesterday and said: “Michael, you know we have a mere 16 days left of summer”? It was hard to say and so much harder to believe.  Where did the summer go?  How is it possible that three months went like THAT?!

But the truth is it did! And the other truth is that plans need to be made for the start of another school year.  For those with typical children, the planning, shopping and prepping is pretty time consuming. But for those with a child with special needs and with an IEP, it is even more so.

We are some 19 years into our journey with Elizabeth.  As such, I thought maybe I would share some of the things I do prior to each and every school year for Elizabeth. For me, the turning of the calendar to August signals that planning time has begun…

The first thing I do is to:

  1. Write a narrative about Elizabeth’s summer
  2. Talk about the changes in speech and language and in other areas on the IEP
  3. Arrange a meeting in a month or so after the start of school

I know that like most of you, IEP time is in the Spring and we review and sign a new IEP that will represent goals for our child in the upcoming school year.  But something that has always troubled me about that is that, those goals, while good at the time, may need some adjusting as our children have had three months to go to therapies, live life and grow over the summer.  So how can goals made then be exactly on point now?

How many of you can, right this minute, think of some new things your child did that was new?  Words said that weren’t said before?  Sentences said that were clear?  I am sure there are many, many of you. These are things that the school therapists need to know. 

How many of you tried a new therapy?  Perhaps did some new “work” at home this summer?  How many of you had that great feeling of “YES! She/he did it”! This needs to be shared with the school!

New skills, new things tried, and new attitude in your child… the list goes on. These all need to be told to those who will be working with your child this year.

back to school

1. WRITE A NARRATIVE ABOUT YOUR CHILD

I did and do each year.  The narrative tells about all the things we did, such as activities like any camps or clubs and how your child did while in them.

I tell them about her anxiety or lack of, about her social skills and any changes I saw.

I tell them truthfully, how summer went.

This brings them up to speed on the “current” Elizabeth.  Not the Elizabeth of three months ago.  My theory here is why have a goal on the IEP that reflects something we have already done.

2. TELL THEM ABOUT THE CHANGES IN SPEECH AND LANGUAGE

I cannot tell you the amount of times I have read a narrative about Elizabeth’s speech goals that I have had adjusted after a summer of work.

If you have done oral motor work with your child, please describe it and tell them what you have seen from it.

If you have been working on a sound in isolation and now your child can do it, tell them.

If you have a child who said two word sentences but now says four words, tell them.

If you don’t share these, precious time could be spent working on things that have already been worked on this summer.  Or worse, not worked on …YET because the therapist does not know you made inroads to these IEP goals.  I am always afraid of time lost, so to bring everyone onto the same page right away is a pretty great thing.

3. TELL THEM ABOUT MEETING IN A MONTH OR SO.

I will admit: not always a favorite request of the intervention specialist and therapists, but one I feel is HUGE.  Because if you think about it, you gave them the update for your child, you gave them the speech and language updates and now they have had the first month of school to see and work with your child.  So to arrange a meeting to get their thoughts on your thoughts is really a fantastic way to make any changes or updates to the IEP.

Sometimes this is when our best work is done. Because we are working with ideas related to the current situation, not one in which we are anticipating what will be.

This is the time, at this meeting:

  • To make the requests you feel are warranted, the ones you feel in your heart need to be there.
  • To make the goals reflective of what is currently happening.

Something else that is important to do is to let them know you wish to remain active in the IEP during the year.  Meaning: let the school know you wish to meet again.  Perhaps in a month or so to simply check in on the goals.  I have been known to request a quick check in type meeting every month.   Again, not always a popular choice but one that assures me that I will not miss something that should be addressed.  I have also found that even if you cannot meet physically, a phone call can work as well.

So now, after all this, one of the things I found really helps is to make copies of the letters and have them placed in the teachers’ mailboxes … Oops, that really dates me, doesn’t it?  What I meant to say was to EMAIL the letters to the teachers staff and therapists. To make sure all will get them and read them, I ask that they email me back to acknowledge they have received the letters.

Because we all know that speech and language goals have hard fought victories, I have found that the sharing of reports from therapist to therapist is pretty great.  So if you have had outside speech therapy over the summer, it is so helpful if that therapist would copy her records and you can get them to the school therapist. This way, once again, all the dots are connected.

It does seem like so much prep work, but please trust me, that the work to undo, fix, or arrange a full on IEP meeting while in  a crisis will be so much more!!!

I am hoping those letters are filled with stories of beautiful words said by your child, fun summer experiences and successes to share!

Wishing everyone a peaceful start to the new school year.

-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.

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Elizabeth: How we made a medical team for ourselves

Posted by Deborah Grauzam on

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.

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