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 peace week.

Michele Gianetti author of Elizabeth Believes In Herself

So many times I read about and hear about parents with a special needs child and their experiences with people looking and commenting about their child.  Due to a lack of understanding and sometimes a missing compassion gene, comments get made, looks get sent and we as parents die a little bit inside.

We try to speak for our children, we try to teach others about our children, we try to be their advocate, we try to get the world to bend to their needs.  Yes, each and everyday we live and work with our children.

I know from my personal experience that Elizabeth is with me ALL DAY, EVERYDAY….meaning I know I think about how she is doing, has she made any gains, has their been a problem?  I would dare anyone to challenge a parent of a special needs child to deny the above…..

But here is something that I have not heard about ….the people who do NOT ask about your child. The ones who do NOT show a genuine concern for them. This is not something I have heard many people talk about.  I have heard so many say that their families don’t understand their child or offer advice that is ill suited to the situation but what about the times when  you are with people who should care about your child, should ask about them in a form or a question that delves deeper than “how are the children doing?”

I know that so many times, people are afraid to ask.  I wonder if they think we don’t want to talk about our child.  As I have stated before they are always with us so to ask is really okay with me.  I would love to tell you about her recent successes, her recent gains, moods, grades or plans.  But  you did not ask, your question was a bit to generic for me to take the chance of unveiling these wonderful parts of Elizabeth.  I guess I hesitate to really open up unless I am pretty sure the other party really wants to hear and hopefully will be as excited as we are about the fact that Elizabeth did this or that. But can I chance it????

Those who feel that others in their family or circle of friends do not understand their child, they may relate to my topic today in a way….It is a hard thing to get that sometimes people just don’t ask….they just cannot or do not show their concern, or care.  There is no anger here in me as I write this just the all too real realization that some people are okay to offer a topical balm to calm what is to us a third degree burn.

Life with our special children is just that special…so to ask, to genuinely ask, is to us a gift, a chance to share what is our LIFE.  Please know that to ask in any other way than in a genuine way is just too much for us to decipher. Do we share? Don’t we share? and How much? and to simply not ask at all is just to us a sad denial of the very reason we fight, advocate, laugh, rejoice and cry.

My daughter is amazing, loving, caring and fun, worth every bit of effort we have made over the course of her life. Perhaps by not asking, I offer out that they are missing out on sharing the lives of these wonderful children we call ours.

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes In Herself