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.

“Okay Michele, we have a room on the 5th floor, so we can all get into the elevator now.  Our room is ready.” My husband John says these words. They are heard by our children who fly to the elevator, all excited to start our vacation.

What I hear is ELEVATOR!!!! 5TH FLOOR!!!!

What I feel is ANXIETY!!!!!

So I immediately try to find a way out of going on a packed elevator. Maybe I can walk the steps up … No, not a good idea, especially with suitcases.  Maybe I can sort of sit with the extra suitcases and then walk up once they are all out of the lobby … but soon there are no excuses and I find myself IN the elevator and truly feeling the anxiety and saying nothing to anyone.

Let’s face it: we all have that certain something that creates anxiety, that makes us wish we were somewhere else. But what about those who have that type of anxiety all the time? The ones who have that anxiety over a good portion of the day for reasons that to us may seem small but to them are huge.

Our daughter Elizabeth, as many know, has Sensory Processing Disorder or SPD.  So she feels this anxiety. Not everyday. Not all the time. But the anxiety is there in waiting and can show itself at any moment.

But how do we deal with it?

How do we make gains in life with it?

How do we create a life with and for Elizabeth?  Here is what I learned.

If you read the last line in my scenario above, you see the words “and saying nothing to anyone.”  Initially, this is how I chose to deal with some of the challenges of Elizabeth’s sensory issues.

• I covered up for her.

• I took her out of places quickly.

• I avoided places with her.

But what I did NOT do was talk about her disorder.  I did not tell those around her why she was crying or having a meltdown.  I could have turned to those who cared about us, but instead I turned away from them to hide, and that is not a good thing.  It is very lonely, isolating and sad.

1. The first thing I would suggest is to TALK.  To those around you, friends, family.  Let them know what is going on and they will be able to help you and support you.  It feels so much better to reach out than being alone.

Something I know now and did not know then, was just how the SPD would affect Elizabeth.  It affects every child differently, so knowing what makes your child anxious/afraid or knowing what stimuli your child needs to remain calm is vital to life with your child.  With this information you can mentally analyze a situation for potential anxiety triggers, things that might cause a meltdown such a sounds, lights or even smells. Or plan sensory breaks to offer your child the stimulus they need at that moment.  Or just having a back-up plan for when things just do not go as planned.  Knowing how your child works will help others learn as well.

2. The second thing I would recommend is READ:

• Articles on SPD

• Personal stories from other families

• Books on sensory issues

• Even Facebook groups for families of children with SPD.

Being armed with knowledge helps more than you can know.

We are all made differently. We all have different likes and dislikes, talents and skills, but something that we all share is the desire to be accepted.  Be it by those in your peer group, those at a workplace, those in your family or just by society in general.  Being a child with SPD can set you apart from most people.  Being a family member of a child with SPD can also be a challenge. But you can help this.

3. I know from personal experience that Elizabeth was the only child I saw last Sunday who froze at the door to Office Depot.  She cannot enter that store without sweating and almost shaking as it is too bright and too vast for her SPD.

Were we set apart from others? Yes. But the thing is, we already knew that she probably would not enter (we still try) so we had a Plan B.  In other words we accept this part of Elizabeth as being just that … part of Elizabeth.  So we were ready and able to help her. The SPD is one part of the puzzle that makes up a pretty amazing girl.  Do we like it?  No, not really.  But do we accept it and her?  Absolutely!  And I know that having her know this makes all the difference.  She knows we will love her and support her no matter what.  Kind of nice, huh?

So I offer out ACCEPT as the third piece of advice.

Accept your child for who they are because they have so many more parts and pieces to them other than being affected by SPD.

Trust me, we are 18+ years in on our journey, so the advice I am giving is road tested.  It does not mean it is easy, as it is not.  But I will say it is worth it.

4. And lastly … LOVE

Love them for the strength they show each day, through feelings and emotions that could fell the strongest of people.  And tell them about this love.  Reassure them when they stumble and praise the heck out of them when they succeed.  Hug them when they allow and don’t when they can’t handle it.  But let them know, as we have each day of Elizabeth’s life, that they are a gift. And that your love will never change.

I wish you all peace in the month of April.

-Michele Gianetti

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