What a Stay-cation!

I will start this blog off with a disclaimer that in no way am I bragging about anything at all. I am only saying that it all simply worked well this week.

I

LOVED

MY

TIME

WITH

ELIZABETH

There, I said it.

And for those who have ready any and all of my posts, you know that we have had our fair share of challenges in the 25+ years that she and I have been on this journey together. Her Sensory Processing Disorder ( SPD) and Global Dyspraxia have been challenging since birth. Sometimes one beats out the other for the forefront of concern, but trust me, one of them is there and present most days.

But she has worked.

HARD! Everday to grow and achieve.

So back to my exclamation prior. The end of the week off that we all had was when Michael and John headed to New York to see the sights. And well, let’s face it, that whole crazy there was not going to be a good fit for Elizabeth. So we decided to stay back and have “girls time”

And it was simply wonderful.

She was all in for this. We shopped, had coffee, got dinners in and watched movies.

I discovered the fun of clicking around Netflix and landing on a show that she and I watched.

I learned she likes getting her nails done in a salon. First time for her because there was always the thought that she liked it better at home.

I learned that she is simply FUN to be around. I mean I KNEW she was fun but to have nothing but time with her, no schedules, no appointments, no calls to make. JUST TIME was a wonderful and beautiful thing.

She picked the places and the pace, and I was like, YEP let’s go.

I loved seeing the side of her that others see when they are with her, and they don’t have to worry about the things I just said.

I got the fun! and it was great.

I love knowing that this Elizabeth is the one that she shows to the world because knowing how easy going she is and how much fun she has with the littlest of things makes my heart know she will be good in life with friends.

It was heart lightening to see all this.

When our time was done, we both could see that we can and will continue the fun things. And I have to say we will not forget the first really long and open ended “girls time”

I think of the young child who cried all the time. Who didn’t want to go here of do this. Who was afraid of the world. and I think how wonderful to see this young adult enjoy life.

She was an is a buddy to me.

And I am in awe of her.

and so proud of what she has become. We are a work in progress but celebrating the good is what we all need to do. Even the smallest of things should be shouted to the roof tops.

So, I am doing just that.

I wish everyone a peaceful week

Why Explaining Your Child MUST Continue All Year Long!

We are working our way into another conference night…the last one of the year. It is a big one because what is talked about here and how the goals are being met sort of set the stage for the IEP meeting and goals for the following school year. So, any concerns you have, goals you wish were achieved or changes you desire are all points to cover.

The way that the school calendar works, in my opinion, is that by the time you get to February, the year is pretty much done. This is in terms of big changes that you might request for your child. Such as testing to be done, an IEP meeting to review and implement changes.

Why?

Because this all takes time. Time to fill out the paperwork, to wait for the testing to start, time for the tests to be fully completed and then the time to schedule and attend the meeting to discuss the results, THEN the implementing begins.

For an IEP meeting? This takes time to schedule, plan for, attend, make changes, approve changes and then implement.

Now add in Spring break, and the fact that schools end somewhere in late May to early June and you can see that any REAL changes may not take root until the following year.

This doesn’t mean those changes are not requested or that you don’t ask for those meeting. NO! You absolutely do. But with the understanding of how it all may play out.

But in the interim time, the advocacy you do for your child will make the difference in the way the rest of the year will look for your child and their goals.

This is why explaining, talking, explaining and repeat…is okay to do.

Often. (And don’t feel bad doing it)

I have learned on this journey with Elizabeth.

It is just like sharing their IEP narrative, if you have one, except you are doing it verbally. ( and okay, sometimes, I give some written things too!)

Explain and talk!

For me,

1.I would explain Elizabeth again. Disorders, how they affect her and her day…all of it again.

2.How she is doing in our opinion this year. What do we really see at home or with emotions she is having from a tough school day.

3.What might need changed in school. Maybe she needs more transition time maybe a buddy to help her

4.What may be too challenging or not challenging enough. In terms of actual goals or just events in the day. Maybe gym is too challenging or maybe they aren’t including her enough.

5.What I can do at home to help both Elizabeth and the school advance her success. It helps the school so know you are part of the team and that indeed it is a TEAM effort

6. Her disorders in detail and how they are being affected by the school year stress. Not always will they know how disorders will affect our children because they may not have had them all year before.

The important thing is to have them understand your child..fully at the beginning, middle and end of the year.

And to know they can come to you with any questions or concerns right away.

It feels good to fully represent your child and who they are AND it really is critical to keep explaining.

Maybe you will be waiting for testing or changes on an IEP but there are things that we can do to help our children maximize their school day all to help them grow and achieve to the best of their abilities.

I wish everyone a peaceful week.

My “No Resolutions” Resolution

THE START OF THE NEW YEAR!!

THE START OF THE NEW YEAR’S RESOLUTIONS! Does it have to be that way?

Never exercised before?  Now you resolve to go not 3 times a week!!! BUT everyday!!  Soon we will see the commercials and infomercials for treadmills, food delivery systems and step tracking apps!

Never let a green vegetable cross your lips?  Now you will each 5 servings EVERY day!!  Blend this green powder into your smooothie NOW!

Tough people in your life?  Now you can post these inspirational thoughts and read them EVERY day!  Now you will have a better mindset to handle these people!

But do you have to make these resolutions?  Really?

Do they really serve us well?

And how long do the typical resolutions last?  I read an article last year that said most resolutions are typically forgotten by the end of January….but still the need to fix and adjust our life on January 1st persists!!

I fall squarely in the camp of those who chose not to make resolutions.  I used to make these resolutions but then I became a mom of a beautiful daughter with special needs and that all changed.

I think it is because I have learned that changes occur so often during a year and that many simply cannot be planned.  Really we cannot control so many things and in the world of special needs, that holds true even more.

I think it is because even though I promise myself to be more patient in stressful times, the truth is I may drop that ball right away.

I think it is because I am so invested in her life and her special needs, that any changes and adjustments are done right when they are needed.  Because each day is different and that can even be each minute!

I think it is because this job of being mom to my globally dyspraxia, sensory processing disorder ( SPD ) child is so very challenging. To deny my emotions and try to 24/7 be positive, I would be denying the reality of my days.  Days that can run the gamete of emotions from fear to happy to sad to joy.

I think it is because, as you know, being a parent/caregiver to a child with special needs requires balancing the lives of their siblings, spouses/significant others, jobs, friends and quite simply LIFE, and that quite simply put….has no blueprint. 

We are doing the very best we can.

Daily.

Given the worlds we live in.

So I resolve to not resolve, but to simply do my best.

Think, adjust, readjust and do it all with the deep love I know we all feel for these beautiful children we have.

I wish everyone a Happy New Year to start 2023

Michele Gianetti author of:  Elizabeth Believes in Herself