Tagged "SPD"


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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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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Elizabeth: Our Summer Speech Therapy Schedule

Posted by Deborah Grauzam on

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.”

TalkTools | horn kitFor 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.

TalkTools | bubble bearSomething 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.

TalkTools | straw kitEven 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.

TalkTools | toothettesFor 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.

TalkTools | schedule boardI 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 18th 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. 

 

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Elizabeth: Speech Goals

Posted by Deborah Grauzam on

Goals.

My wish list.

Two things that I have carried with me since Elizabeth was born. Actually, more like since the minute she was diagnosed.

Goals and my wish list.

I have carried these things around like two best friends. I checked in with them often, planned things around them, and happily checked things off of them when Elizabeth did something new.

They have never left me in all these years, and I feel, if I am being truthful, that they will probably always be with me for Elizabeth. But they have changed shape, that is for sure:

  • - I just hope she can say the last part of her words.
  • - I want her to get the chance and try to go into this class room.
  • - I hope she will talk to some kids on recess.
  • - I want to work with her on her writing.
  • - I want her to learn to text her friends.
  • - She needs to learn to sign her name in cursive.

Yes! It has changed, but the one thing on the list that continues to be there after each flip of the calendar year is her speech goals.

Speech is this inherent part of Elizabeth needs. Her dyspraxia is quite severe and as such we have fought long and hard for any and all gains in the speech realm. 

But with dyspraxia, those goals took extra work because those with dyspraxia form habits very quickly. Be they good habits, like saying a word correctly, or bad habits, like misarticulations. Well, these bad habits are SERIOUSLY hard to break.  It is like once they are formed, they become so strong!  So we learned to learn things correctly the first time. Perhaps we learned this a little late in the game but we learned it nonetheless.

Speech Goal #1

So back to the goals and wish list… right now in Elizabeth’s speech life, we are working on social speech. The kind of thing that requires, among other things:

  • - Thinking about what someone said.

  • - Answering on topic.

  • - Staying on topic.

  • - Allowing everyone a turn.

The dyspraxic mind typically has trouble with organization of thoughts and information, so these goals are kind of tough for Elizabeth when she is stressed or too much is going on in her life. Someone will ask her a question about X and she will answer about Y. I know why it is happening but the poor store clerk does not. So we talk to her a lot about focusing and staying on topic.

Speech Goal #2

Another fan favorite on the goals is for her to OPEN her mouth when she talks. For her, any anxiety shows itself in her talking as if her teeth are glued together. Try it now. It is very hard to be understood this way, and that is for those of us who do NOT have dyspraxia, so imagine how hard communication is for her. So she hears plenty of “Open your mouth, Elizabeth, breath and talk.”

Yes, I am sure she is having a ball with me on those days.

Speech Goal #3

Directly related to the above goal is the new addition of singing lessons for Elizabeth.  She loves, loves, loves music and loves to sing, so we contacted a wonderful lady to work with Elizabeth. It is not just singing, it includes:

  • - Muscle work for her jaw and mouth.

  • - Deep breathing exercises.

  • - Focusing.

  • - Projecting her voice.

  • - Even reading, as they read and sing current songs.

Here is something to know, for those of you with older children: it is so important in my opinion to keep things age appropriate. Something that boosts their self-esteem is huge!

Elizabeth loves this and there is follow-up work for us at home! So win-win!

It is odd to think about it but we don’t GO to speech therapy in a pure sense anymore, we work on goals each and every day. (If you ask Elizabeth, she would say every minute.) But we do not have regular speech classes. We check in with Mary often, readjust a goal or two but we do most of our work in social settings now. Because that is where we find the need.

And that brings me up to the last update for Elizabeth.   

Speech Goal #4

Find the need. Once you understand your child, their disorders or needs, then you can start to find ways to help them. And as their needs change, so does the therapy. In our case, these needs lead us out into the world now. Into the world to talk, to engage in proper conversation, to communicate thoughts and needs. Actually, it is a pretty big undertaking now but this is where we find ourselves.

Speaking of which, I can hear Elizabeth loudly complaining that her brother took the T.V. and it was not his turn. So, I will go now to referee an argument, an argument that likely would not have happened had we not done all we did. We will keep working and encouraging because she is worth it 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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