With the impending school year, I can almost feel the anxiety we would have as Elizabeth got ready for a new school year, another teacher and hopefully another year to be “understood”

Each year in the Fall, I would write a letter to the school telling them everything that she had done, learned or struggled with in the summer. I told them all about the things she liked, didn’t like and anything new that I thought would help everyone see the complete picture of who Elizabeth was.

NOT who she is related to the label of her disorders.

But who she IS!

The sum of all the parts. The sum of all the things that make her, well, Elizabeth!

In addition to this anxiety, was the strong feeling I had of a big marker of time happening. I mean you cannot deny the passing/marking of time when you are faced with a new school year that has the numerical year after it. Such as when the school send letters home welcoming you “to the new school year for 2022-2023”

Yes, it certainly marks time. And for me, it was just this marker that got my head thinking about all the things that maybe we still needed to work on, or maybe the things I wished she could do that others her age did without any issue. Or what should our new goals be for the year to address all these things.

I guess for me the ending of summer and the beginning of a new year was quite the emotional journey. I know that with Elizabeth’s disorders it was so critical to have the year start off the best it could, to keep her anxiety down and all for others to be able to work well with her. Her disorder of SPD ( Sensory Processing Disorder) and Global Dyspraxia are tricky and can sometimes be big players in her day and other time not so much. So it absolutely a necessity for those with her and working with her understand her well.

Flash to 2022, and Elizabeth is 25 years old. Way past the time that this time of year should elicit the same feelings as when she was younger. And in many ways that is indeed true. But in other ways you would be surprised that they are still there.

I think it is because we as parents of these beautiful young people become conditioned quickly to do things a certain way for them, to be their advocate. This role is one that changes and adjusts over time but the role sticks with us, I think forever.

I can say that it is for me.

I mean I was driving with Elizabeth today to get coffee and we were talking.

About what, you may ask?

What her goals are for this next year! What she wants to work on, what she wants to keep in her day and what she wants to let go of.

We talked about her jobs and if she wants to work more (if that is possible) or the same.

And how she can keep being more independent.

Yes! You hear it too, don’t you? We are pretty much doing the same thing we did when she was younger only now she is older, in on the decisions and plans and we can control more variables but STILL, it is pretty much in the same planning family.

I liked hearing what she had to say, and I like making these plans because they are HERS not just what we, her parents, think is best.

So, for those who may have a lot of feelings at the start of the year, remember we all need supports. And we all need to adjust and reassess things.

Our beautiful children with special needs are no different. And we are all a work in progress in this thing called life.

I wish everyone a peaceful week,

If you have a child that is in school, you are probably enjoying summer break.

And probably watching the days on the calendar move closer to “school range”

I know that we did a double take on our calendar to see that my son starts school in one month!!!!

For those who have a child with special needs, the transition to a new school year means even more feelings and even more work.

I hope help those just starting on the road with the schools and those who have to maybe take a deep breath as they think of another year with the schools! The pandemic’s effects on the school are vast and they have so definitely affected the special education area. From decreased staff numbers to programs that may not be able to be what they were before.

Parents and caregivers so need to know that your advocacy is critical for your child.

I can across some thoughts that I had written years ago when Elizabeth was headed to middle school and leaving elementary school on just this topic: Hope they are what someone might need to hear today:

“Our world has been changing, By that I mean we are just beginning to talk about Elizabeth’s transition from middle school to high school.  I find it exciting on one level and frightening on the other.  My thoughts go from ” I hope Elizabeth will be understood” to ” I hope that the new teacher and I will have the great relationship that I have now” to ” I am so happy to know how to advocate for my child”   The last skill has been one learned and fine-tuned with the very experiences of my life with Elizabeth.”

We have been working with the school for over 7 years now. I know my knowledge of how to advocate for Elizabeth has grown so much since her first year in the public school system. It is a funny and ironic thing but the schools are there to educate children but sometimes the schools need to be taught on how to teach a child with special needs.

My daughter has dyspraxia and sensory processing disorder( SPD), both disorders are not always recognized. But both make learning and achieving so hard.  And both affect Elizabeth each and everyday of her life… That makes teaching my child much more difficult.

This is where it became vital that I become an advocate….a strong advocate.

Being an advocate takes a total change in one’s mindset. It takes changing from assuming the school and teachers are doing what they are supposed to to making sure that they are.

It takes a lot of work and a lot of record keeping but most importantly a belief in your child’s abilities.

One of the hardest things, I think, is the initial conversation I had with the school about our child. She was just 3 years old then. I felt nervous describing her to them. Partly because I just did not feel they would understand her and her needs, and partly because I was just figuring out how to achieve successes with her and I wanted to make sure they understood how she “worked”. I grew in my strength as an advocate, so that my nerves were replaced by a calm feeling that I was strong in my ability to represent my child.

I think my advice to those just starting to think about talking to your school about your child, either the very first time or prior to a new school year is this….

BE SURE OF YOURSELF, DO NOT FEEL INTIMIDATED, AND FINALLY BELIEVE IN YOUR CHILD AND BE WILLING TO ADVOCATE FOR THEM IN ANY SITUATION.

Try to get yourself into the right mindset, the one being that You know your child better than anyone, that you know what they can do, what they can’t quite yet do and why.  

You know the signs of a meltdown, and signs of overload.

You know their sensory diet needs, you know why dyspraxia makes pencil holding hurt sometimes, or that focusing their eyes are hard.  You know how they learn best, when they need a break, how they like to take the break and more……

You know how they work and are ready to help teach the teachers. Don’t be afraid to do this.

YOU KNOW SO MUCH…Don’t doubt yourself. Living life with your child with special needs gives you knowledge that only you can have!

I think it is so important to get into a good mindset to be ready to think about a new school year and to talk to the school about your child. Be it in a ” new school year letter” or a face to face with your child’s new teacher.

Now is a good time to get this good strong mindset, so you will be ready to talk and to make sure that the new school year will be the right fit for your child’s needs.

After all the calendar is daring to flip to August faster than most would like.

 I think one harded things I have both learned and had to accept on this journey with Elizabeth is that her disorders will NEVER go away.

EVER

They may fade into the backround and maybe hardly be seen sometimes. But they will never be gone.

I think that we know our children with special needs, how they work, what they like, love or hate.

It helps us to do our best for them, to help others understand them and how they “work”

This helps us teach those who work with them because once our children are understood, they real good stuff comes.

But the one thing that I had to learn years ago is that no matter how much work we do or how calm she seems at any one time, her disorders will always be a part of her. For those who don’t know, my daughter, Elizabeth has SPD (Sensory Processing Disorder) and Global Dyspraxia.

And with these disorders comes a certain given amount of anxiety.

Sometimes the anxiety comes from the anticipation of a new thing (SPD) How will I manage it?(SPD) How will I do the things this involves (dyspraxia)

And sometimes it comes as a result of changes or stress. How can I handle all that is going on? (SPD) How can I deal with these emotions?( SPD/Dyspraxia)

So truth be told, we have had a great number of stressors in our home this month. From COVID, to an ill family member (my mom) to planning for, and dealing with Elizabeth’s beloved sister moving to Colorado to finish her residency. Add in the fact that June’s schedule had no real pattern ( vacations for friends/work schedule changes/COVID for friends)

And you have a real potpourri of reasons that we started to hear some humming from Elizabeth. That is the sign that internally, she is struggling. I can see that she looks a bit more disorganized as she is going about her life and we have talked about it. But not the WHY, more like the HOW CAN I HELP YOU WITH THAT TASK.

Now the humming. Which we have not had as part of her for a LONG, LONG time.

Hence the thinking about her system and that those disorders have moved from the recesses of her to the forefront!

So last night we had a girls night and during that night, we talked….

She cried for her sister.

She cried for the changes that make her heart sad.

She cried because ” I have to be happy again’

We talked more.

She is so amazing and in touch with her feelings and emotions.

Life comes at all of us and we can all be sent reeling with it but for those with special needs, it is just that much harder.

I am guessing we have some more work and talking to do to help her come down from the month we have had. After all, we all need support and help from others.

I just went upstairs to offer her some therapy music to help her system calm a bit.

I wish everyone a peaceful week,

Michele