I know that most of you know our story.

I know that most of you know that our beautiful Elizabeth has two disorders.

And I know you know that our journey has been quite winding and amazing.

But how about an update about Elizabeth?

Right now Elizabeth is 19 years old and is graduating from high school in June!

Yes, graduating from high school.

And I am having quite a few feelings about this ending of one phase and the beginning of the next. It is so hard for me to think that the very place we have known for so many years, that being our school system, will soon no longer be part of her life.

She will be in the “real world.” If you look at the wonderful young lady right now, it is very hard to think that she was non-verbal for the first five years of her life. The same goes for the fact that she loves life and is one of the happiest people I know. Her early years were the complete opposite.

So many good gains made and so many hurdles conquered.

But the truth is, she is still affected by her disorders. But it is in a much more subtle manner. It is like it kind of builds up, and builds up and then she has her overload moments. But the disorders are there and as we transition from high school to the next leg of her journey, those disorders can and will show themselves. I think that will be the biggest player in the next few months, especially as we talk and plan more for the Fall.

She loves her exercise, especially walks. She loves to cook and she helps out at a local catering business two or three times a week. She loves working with children and volunteers at one of the preschools that is housed in our elementary school. And on the other end of the age spectrum, she volunteers and bakes for the elderly at an assisted living facility. This is once a month.

I am so proud of all she is doing, so thankful for those she works with, who love her and understand how she works.

It has been hard to advocate for her throughout the years because there have been so many people who have shared their talents with her, which has been a blessing but also a challenge. I think back to the days when we sat down across the table from this year’s teacher to talk about SPD and Dyspraxia. Then working with them all throughout the year. Something that we have taught and continue to work on is “self- advocacy.” This is a tough thing for any child to do and especially so for someone with the disorders that Elizabeth has. So this is something that one needs in life and challenging as it may be it is a necessity. She is getting better and better at this self-advocacy.

Elizabeth has her supports in place wherever she goes and she knows who her “go to” person is in any situation. You know, that person she can directly go to if there is a problem or situation that she needs help with. We learned throughout the years just how hard it is for a person so affected by Dyspraxia to initiate the steps needed in some situations. Especially ones that require a quick plan or action. So teaching Elizabeth this vital concept and having her use it has been a big success for her.

So now she graduates …

So now she moves on …

One thing is for certain, we will continue to talk to her about any and all things, any and all emotions.

We just want to keep fostering her interests, teaching her each day and letting her know we believe in her as she takes this next big step.

If anyone has anything else they want me to update them on about Elizabeth, please let me know.

Also, to read more of my blog about Elizabeth’s future, please go to www.michelegianetti.com

I wish you all a peaceful month.

-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 officially the middle of the school year. Okay, not officially-officially but to me it is.

I find myself looking at the middle of January and realizing that fact and think WOW, that time already.

It is after this thought that I know it is time do my mid year check.

By this, I mean, I take a mental look at all the areas of Elizabeth’s life and see what successes we have seen, what struggles she has had, what changes we should make etc.

For me, it is easier to do check-ins frequently and catch anything that may be amiss than to have small problems grow big. Also, if your school system works like ours, February is the month of the second conference time. What better than to do this mid-year check and arrive at the conference time with clean, organized thoughts.

So with that in mind, here are some thoughts to help if you wish to do the same.

MAKE A LIST OF ALL THE AREAS OF YOUR CHILD’S LIFE

• speech
• O.T.
• Socialization
• School work
• Outside activities
• Things at home
• Anything else you can think of

WRITE DOWN THE POSITIVES AND YOUR CONCERNS FOR EACH

Here is the time to be honest: if something has been bothering you about a class or therapy, write it down.

ORGANIZE PLAN FOR EACH AREA THAT YOU ARE CONCERNED ABOUT

•  Some things may be going along great but for those that tug at your heart do the above.
• It helps to know who you need to talk to about the concerns. Which teacher or therapist.
• If I had a concern about speech and Elizabeth’s work in a class. I would know I could address this concern with both the speech pathologist and intervention teacher present. This way I could have everyone on the same page at the same time.

WRITE DOWN THE CONCERNS FOR OTHERS TO READ AND KEEP

• I am a firm believer that something written down and handed to a professional quickly helps them see just what you feel in a nice orderly way.
• Also, it is such a good idea to have a copy to show you did address these concerns or did discuss them with the teachers and therapist.

MAKE A PLAN TO REVISIT THE CONCERNS

• I always thought that to check back in with the teachers in about two to three weeks was a fair time.
• I would watch for any communications that would come home from the school on Elizabeth’s communication notebook.
• I would talk to Elizabeth about the concern.
• I would contact the teachers or therapist at the agreed upon time.

I am not saying that there will be a situation or concern at this time of year. But we all know that IEP time is coming, plans for summer are on the horizon and life for our children is one big fluid situation.

So my thought is stay that one little bit ahead so that you and I don’t have to run to fix something for our child.

I wish you all a calm and if it is winter where you are, cozy month.

-Michele

Michele Gianetti writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder. Follow her story since the beginning here.

“That will be five dollars to get into the game.” Weird how those ten words can make me think.

Okay, perhaps you might need a bit of background information here. I heard those words as I entered my ten-year-old son’s basketball game this past Saturday. I had not heard those words since last year’s basketball season. A full year ago. 365 days ago. But it felt like yesterday.

And this got me thinking about time. Or rather the quickly passing thing called TIME.

When you look at your child’s pictures from years ago…what do you say? For us it is: “Wow, time passes so quickly” or “Where did the time go?”

It is a funny, crazy thing in life, this thing called time. Because it passes so quickly on one hand, but try to fill 15 minutes with a younger sibling while waiting for your other child in therapy and it passes more S-L-O-W-L-Y than you can imagine.

Holidays mark the passing of time better than anything I can think of. We can remember last year’s holidays and hardly believe we are here again. And we can get so into the things we have to do, the places we have to be, and the gifts we have to buy, that we can forget to take it all in and remember. And make those memories!!

I know that when Elizabeth was little, like one or two years old, and deep in the throws of her sensory needs, I spent so much time working hard to keep her “good” that the holidays were in my rear view before I had a chance to enjoy them.

I learned so much about life with a special needs child throughout all these years. Not only about Elizabeth and her special needs, but about how to manage them, encourage her, and help her. And be peaceful myself.

I learned that:

• We can skip an event because of Elizabeth and that is okay.
• We can plan something and change our mind if we need to for Elizabeth and that’s okay.
• We can be proud of the work we have done for her in this year’s time and that’s okay.
• We can make memories our own way and that’s okay.
• There is no one way to make Christmas special and that my friends is FREEING.

If you allow yourself to do the above, in my opinion, you can free yourself to make memories and enjoy the holidays to the best of your ability.

Something else to think about:

When you look back on the holiday from last year to this year, you can see the changes your child has made. Gains in words said, clarity of words, new skills mastered or even some good eye contact maintained. Whatever it is, you can see the growth as measured by the time frame of a year. So allow these positives to be a type of Christmas present to you and your family. Some of the best presents cannot be put in a box!

I wish you blessed holidays and more memories than you can count.

Michele Gianetti writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder. Follow her story since the beginning here.

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 4^th, 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.

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.

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.