Tag Archives: SPD

Who Needs A Break? Raise Those Hands

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This is not a new question that I am posing to you or to me.

I have had the feeling that asking has been in order for some time now. For me, it really isn’t because of any one thing. It IS because of all the “one more things” that have added up to the point where I can tell my reserves have gone down. And I am absolutely sure that those reading this will get it.

What does this lack of reserve look like in my world you may ask? Well….let me help you understand.

I have a pile of things on the kitchen table that Elizabeth and I were supposed to get through by Sunday. It is now Wednesday night and the pile is still there to which I say “Tomorrow Elizabeth we will do that work!” And then I say goodnight to the pile and plan to greet it again in the morning. Simply no brain space to get on in there and do it.

I have been on the phone with troubleshooting for my new laptop. Many times, for many hours to resolve nothing. Then I was on it again yesterday to once again, rehash the issue…for 2 hours and I have to say I am sure that the conversation I had will make for some seriously good “quality and training” options for the company to use. I have to say my impatience was showing!!!

I love watching Elizabeth paint her pictures. It is fun to see what she sees when painting a picture from an image. But yesterday, I watched as she set up her paints and I hugged her and headed downstairs to do some work I HAD to get done for me. I wasn’t there watching and that is not really me.

Michael forgot to pack his backpack the night before and we were a bit late today and it bothered me more than it should have.

I asked my family why they needed dinner EVERYDAY..I mean can’t they skip it once in a while? They just looked at me and waited for the “real” mom to return.

So low reserves for me takes on many forms and signals to me that I need to nurture myself so I can refocus, regroup and continue on….

I know that the pandemic has been challenging to every human on earth and it has an anniversary coming up doesn’t it. As I write this blog I am noting that today, ONE YEAR AGO, was the night my husband asked me if we had any extra food stored up and that he thought it would be a good idea to “get some more food into the house.” I was not sure why this was important, I mean I had heard of Coronavirus in January but not much since, but since he is a physician I assumed he had read or heard more than me. so I was fine with the shopping but it was when I got into the store to load up a cart that I could feel the eerie silence of the store and noticed a shopper walking by with surgical gloves on and a determined look on her face. This was at 8:30 in the morning and the store was pretty empty. I took the groceries home to put away and asked myself…just what was happening.

Now a full year later, I look at my storage room that has been loaded, emptied and reloaded too may times to count and fully get what happened. The thing that gets me is that one year later and we are still in the thick of it.

I know I just need a little time to regain my reserves and perspective but the work we as parents and caregivers to the wonderful special needs children takes a great deal of both physical and mental energy every day….without fail. We have fought the good fight BEFORE the pandemic but even more so during it. And it is so very challenging, WORTH IT but challenging. Elizabeth’s disorders of Sensory Processing Disorder and Global Dyspraxia make life hard work and require certain things each day. Things that are simply required and not optional.

I know I will try to take some of my own advice, advice I gave out a long time ago in a previous blog: To try and put something happy in each day to nurture myself. like: quiet time in prayer, a coffee picked up somewhere, a phone call to a friend or doing my nails. I need to make that a priority, we all do really.

I also have to see the good in the situations which challenge me, which I am typically pretty good at doing but with my reserves low I am not. I need to see that Elizabeth is overall doing well…it goes without saying we have our ups and downs but overall good! That we took crushed schedule, thank you COVID and turned it around to be all about HER goals. That she has her own ETSY shop for her art and much more. That the journey she is on does not move in a straight line and the twists and turns, though not fun, can bring growth and positive changes.

So I as the headline says…raise those hands. I wish I could see the hands of those people who are working so hard each day for their special needs child(ren) and who share my dip in reserve and we can tell each other that it is okay.

I hope my sharing may be something someone needs to know as they have their own little dip going on.

I plan to finish this blog and do my nails…..baby steps to regaining the reserve!

Please treat yourself….whatever that looks like to you.

I wish everyone a peaceful week

Michele Gianetti author of Elizabeth Believes in Herself

A Trip to the Library: More Than Just Returning Books

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– I really loved that time of life, when my children were all small, and the day was yours to do with whatever you wanted.  You know, never having to look at the clock and wonder if you missed the bus or if you had to hurry to get your child off the bus…the day was yours.

– I loved being able to run to the library, to the park, to get ice cream ( of course, WAY before COVID)….I simply loved and still love my time with my children.

– I could go back and re-start my family again I would do it in a second.

– Life goes by so quickly

– Life was so hard when Elizabeth was that age

– I see those relaxed eyes looking back at me in the mirror not as often since Elizabeth was born…WOW did I just think that? I know my eyes tell what is going on in my heart.

– Yes! yes I did

– I can’t believe I just thought that!!!

– It is true, so why do I feel bad thinking it??….

After this mental ping-pong game I then found myself reflecting…

Quite a few memories of our early excursions with Elizabeth float through my brain at this point.  I remember the tears and fear in her eyes.  The times when going to the park was too much for her to handle.  The looks from other moms and people, who had never seen a child like Elizabeth before….It had been hard….it has been so very much work.

“Why do I do this to myself…why do I allow myself to go down that particular “Memory Lane?” I think to myself….  It is not like it is fun or helpful or anything other than anxiety provoking….but still there I was…firmly walking down the memory path, when all I wanted was to return some books.

I wonder if other parents of special needs children do this?  See the parent who is simply content…and wonder…..just for a moment…..what it would be like….what it COULD be like…to feel that calm….that feeling of lack of concern or worry about meltdowns or overloads…to walk to the car after the library and know all is well.  That there are no therapy appointments to go to, or sensory diets to complete at home….just a car ride home to enjoy.

I don’t wonder often but sometimes I do.   Maybe it is my mood of the day or maybe Elizabeth is not having a good day or maybe it is just that time when I feel tired….those are the times I do wonder or think. Full disclosure the last few days with Elizabeth have not gone really well. Hard to say exactly why and we have been doing a lot of talking. But speed bumps like these days make me have a lot of feelings……

Back to the parking lot….

I kind of busied myself at this point getting my books out of my car and when I looked up, they were gone.  Just the back of their van was visible and it got smaller and then was gone completely. And just like that, “Memory Lane” was gone…  I closed the trunk of my car, hoisted the bag of books on my shoulder and went into the library by myself.  I kind of felt tired now, almost like I had had a bit too hard of a workout.

I know I am not the same person I was before Elizabeth was born, I know I will probably never be that carefree person that I was….but on my way in I allowed myself to think that in so many ways I am a better, stronger more determined and focused person than I would have ever been without Elizabeth.

That no matter what, my daughter is worth EVERY worry and effort….that not giving up on her, fighting for  her may be harder work than most will know.  But all of it is worth it when you think that you are giving your child the best chances in life.

By the time I came out of the library and got into my car, I was feeling more settled. There was no one in the parking lot and considering how hard this memory lane thing is.  I am not going to lie..I was quite relieved!

We are all on these unique journeys, filled with so many emotions each and everyday.  Who knew a simple trip to the library could come with all these thoughts?!

 I wish everyone a peaceful week. Please wear a mask.

HOME…. What the Word Means in Quarantine…..

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I was watching a movie the other night that is really a classic. In the movie, the lead actor is in a fight that he knows he needs to win.

His companion, who is encouraging him before his battles, says, “You need to finish this fight and we can all go home.” Seeing this grown man speak about the thought of “going home” with such a reverence. Like you can have the best reward …home or

when your work is done…you get to go to the place that has peace….home. Or the place where you are safe…home.

Now this movie is set in the 70’s so home to those back then meant many things, I am sure. But for us, living through this pandemic has such a different set of feelings.

Home is the place we can be with those we love so much, where we can take off our masks and not be scared. It is the place we can relax, do work, zoom calls and video chat with friends. Home has become the center of our worlds currently.

As grateful for this safe center as we are, we can find ourselves looking at the walls of our homes say, on day 63 of the quarantine, and swear they are closing in on us minute by minute. Ask Elizabeth, my special needs daughter, how she has been feeling about things ( see blog from last week).

So what are some of the things we can do help us keep seeing home as safe haven it is supposed to be.

THINK BACK

I am not talking years back, only go so far as around March 15th, about the time the virus hit the U.S. What did you wish you had stocked up on that you didn’t have time to get? What do you wish you had for your children to make the time together better? If your child has special needs, what do you wish you had had time to organize or purchase for them?

So now, perhaps do organize or maybe purchase whatever you have thought about. See our store for great items for our special needs children.

THINK AHEAD

Again, not too far into the future…just a bit to see what your home may be like when winter hits or if we are required to be home more. What things do you know you will need to plan. What things did you know worked well before and you want to do again. What about: Worktime? Craft time? Workouts? Therapy times? Do you need to talk to current therapists to ask about telehealth options….just in case. Does your child have important appointments that planned? All things to think ahead about.

MAKE A CHART

Or make 5 charts! Whatever helps you put down all the things from the above on paper and our of your head. Having something to refer to…already ready…is a great tool!

FAMILY MEETINGS?

I say this with a question mark because family meeting in our world are not always greeted by cheers. They are usually introduced through clenched teeth as I say “WE NEED A FAMILY MEETING” but in this case, I mean a positive, idea sharing and feeling sharing kind of family meeting. Maybe they have things they want to share or plan as well. Plus it is a good time to share the charts or ideas you had.

NURTURE SELF.

This is an easily forgotten or pushed aside thing especially as we get busy with holidays, full days or times inside. I have learned the importance of doing this. I am not talking spa days….just simple little things to restore your reserves as the parent or caregiver you are. For me, it is working out or coffee and reading a bit. Whatever it is for you….it is important…the self care is important for all really.

So with the ever changing world, holiday times and winter weather ( if it applies) home will be where we find ourselves so much and the hope is that we can do things that keep us talking about home with the same feelings as the man in the movies.

I wish everyone a peaceful week. PLEASE wear a mask! I do for my mom and others who could get really ill.