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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 wish everyone a peaceful week!

Michele Gianetti author of Elizabeth Believes in Herself

So as we all read in the last blog, Elizabeth’s emotions have been running on high lately.

And guess what?

We had a vacation scheduled. We are thinking VACATION with an exclamation mark after it. She is thinking vacation with a big question mark by it.

We went away for the week, last week.

It was up to the lake, which is about an hour or so drive. We rented a house right on the lake that promised beautiful sunsets, which it certainly delivered

The easy part was clothes packing because it was hot, and we had a washer and dryer. So shorts and T-shirts which Elizabeth pretty much did on her own.

The harder part was the other stuff packing because this is the stuff we take to help her be okay in a new room, bed, shower etc.

In other words all the things that make this new place “just like home”

And this is directly related to her special needs, specifically, I feel to her SPD ( Sensory Processing Disorder) For those who don’t already know, my daughter, Elizabeth has SPD and global dyspraxia. Both both disorders affect her throughout each day. Sometimes it is clearly one more so than the other.

Elizabeth and I packed her blue light bulb (she likes to have her room turn a soft blue all night), her 2 lanterns( to light up the corners of her room) Her linen spray (to help her relax) Her therapy music ( to help her emotions) and her paints ( to relax on the deck). I’m sure there are more things but let that suffice for now.

I feel a certain amount of both stress and almost sheer dread when it is time to pack because for over 24 years any and all trips we took would require such detailed packing. Sometimes with lists that were so long and with items that you could not just grab at an errant Walmart if you forgot them.

I will say it is much, much better now for sure. But there are still items and considerations that simply still have to be made.

But for this trip, it was her SPD that showed itself. I think because she went into the trip with her emotions going this way and that, that her emotional reserves were not replenished enough.

In any event, we were on our way on Tuesday!

We arrived and had a fun lunch, sat by the lake, did some fun shopping and all was great. We went to the house to get settled and found a PORCH SWING! If anyone knows my Elizabeth, they know just how much she LOVES swinging! So, woo-hoo, off to the swing she goes, and she has the amazing view of the lake to swing to!

Then soon it was time for a dinner and to bed.

Let me tell you this, setting up the first night’s sleep stuff takes TIME! But once done, I thought she might sleep well.

I was incorrect. I think it had to do with the room having an in the window air conditioner unit. It was a bit loud and add that into the mix and you can see how that could create an issue.

She did not and she was tired but a trooper.

We had a great day the next day though. We did our 4 mile walk, went to the beach, lunch and had a ball!

I thought for sure she would sleep.

I was incorrect again.

And this is where the vacation started to slide sideways.

I have learned over the years, just how vital sleep is to her emotions and ability to handle things. So with 2 fair nights of sleep, she was pretty prickly. That is the word I use to describe her when she is J_U_S_T holding on and anything you ask of her, is challenging. ANYTHING!

We did our days and she hung in like a trooper but it was with us building in rest times, sensory breaks and the like.

I would say that the vacation was a good, fun and relaxing one (more so for those of us that slept) and I will also say that she was the first one to happily announce on our last morning that “today is the day we GET to head home!” While all the rest of us are wanting one more day, she is practically packed and waiting by the door.

She got home, went to her room and flopped on her bed. She made sure to tell me just how much she missed her room!

I am proud of her for all she is, the work she has done in her life and I simply love her so much.

Also, she was asleep that night by 8:15.

I wish everyone a peaceful week.

Michele Gianetti author of I Believe In You

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