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 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.

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.