Archives for the month of: April, 2022

As a mother of a child with special needs, I have spent so much of Elizabeth’s life thinking about places we are going and how to make them work for her. People we are going to meet and do they already know how to talk to her ( just like everyone else) or do they understand her trepidations.

For those who don’t already know, my daughter Elizabeth has special needs. She has global dypraxia and SPD (sensory processing disorder). Both of these disorders affect her life daily and make life hard work. There are days when her disorders “show” themselves more than others and days when doing well known tasks almost appears to be completely new, almost as if they were never learned. That is what makes the challenges so great. When Elizabath was young, it was her SPD that really affected her life.

Her SPD has made her afraid of so many things so very early on in life,  I am sure so many people just thought she was a very unfriendly, cranky child.  They would try to talk to her or reach out to her to try something and then Elizabeth would respond in a way lead by her fear…she would pull away and cry.

Her dyspraxia, now the bigger piece in her world, would, when she was young, make doing something even if she wanted to too difficult, so the word “NO” would be heard or if not heard.  The head shaking back and forth and the pulling away generally got the point across.

And trust me, it is not like I could not understand how it would all seem/look to a person who would encounter Elizabeth for the first times.

So back to what I was saying…..I spent a lot of time planning and thinking and evaluating…  I still spend time and think I always will on these lovely thoughts, just maybe  less as time goes on due to therapies and maturity on Elizabeth’s part ( and probably mine too!)  but for a person who has devoted such brain space to this, it is always so wonderful when you realize in certain places it will be okay. When you have been there enough to know you can relax and enjoy.  Or you have a group of people with whom all is okay. So again, you get the chance to relax.

But one of the best things is to find a NEW person or group of people who just get your child, who listen when you tell them how she “works” , who listened when you told them how to talk to her ..who just “GET IT”  that is a wonderful gift and one that is treasured beyond measure.

 My newest person in our life is our newly met art teacher.  Elizabeth LOVES art. She has always loved it and I am sure some previous blogs I have written have told you all about it. So we were able to recently meet a person who will do virtual art lessons for Elizabeth. Actually her first lesson is tonight. But it was the conversation that she and I had prior that let me know “she got it” She talked about motor planning, overload and “talking things through” with Elizabeth.

I

DID

NOT

HAVE

TO

That was just wonderful.

I will let you know how this goes!

But to those who are raising a child with special needs, you know how great this feeling is.  I hope everyone meets someone this week who just “GETS” your child.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself

The title says it all… special needs moms may not say it clearly or often but there are things we most definitely need from others around us.

Instead of rejoicing at milestones naturally achieved, we watched our children struggle to make these goals and sometimes not achieve them at all.

While other families attended football games or birthday parties, we would dissect into the smallest bits, just exactly how that game or party could play out, so we could decide if our special needs child could handle it.

Instead of waking up and pondering what we need to do that day, and enjoying the morning with our children.  We would get up, praying our child would feel calm that day, their systems would allow them to go with us with no meltdowns.

For those who don’t already know, my daughter Elizabeth has two disorders that make our life full of the above mentioned scenarios, when she was younger each and everyday was filled with these situations and more. She has global dyspraxia and SPD ( Sensory Processing Disorder). As such I became a different person than I was when I was the mom to our first  child, a typically developing girl.

I can only speak from my experiences, but having encountered so many other parents whose children have so many other disorders, I think the core feelings might be the same.

The one memory that really was the moment I truly realized I was a special needs mother was when Elizabeth was two years old.  She was in her height of fear and anxiety.  Going anywhere with her was a huge challenge.  The tears, arching back, meltdown…..We had not begun our search for a diagnosis yet.

We were at the park, enjoying the day, Elizabeth was usually okay here for a bit while swinging (makes sense right?)  Emily was playing and having fun when my friend and her two children  happened to show up.  Out of the car comes my friend, her two children run out to my two and want to play… the sudden change in energy, talking, laughing made Elizabeth nervous…she begins to show signs of a meltdown.  Emily wants to run and play with them but the park is big and I know that I need to go with her, but Elizabeth is looking pretty tough now.   My friend is saying ” Just take her out of the swing, and she’ll be fine”  Emily wants to play….Elizabeth wants to go….My friend could not possibly  truly understand……I am ALONE with this…..  that was the moment….I will remember Emily’s face and her wish to play, and the fact that I tried for her but could not make it work….forever.

I know that for Emily it was just a day in the park, for Elizabeth it was another anxiety filled moment.  Butfor me, I took home some things to think about:  Granted it was another good year before we really knew what Elizabeth had or how to begin to treat her and as such what could we really have said that day. But special need moms need some special things and we need to do some special things to help ourselves as well.

Here are some of the special things we can do:

Try to be honest– in other words simply saying ” We can’t come to your child’s birthday party” can be replaced with. ” We are sorry we can’t come to your child’s birthday party because our child has SPD” then explain what that is and how it affects your child.

Try to be honest about how you feel:  I can remember smiling through it all, the fear, the pain of watching Elizabeth be so afraid.  I guess I thought showing my smile would tell the world I was strong, but in reality.  I needed to be honest. I needed to tell those around me and those working with Elizabeth how I was feeling.  How watching the therapy made me feel.  Then those close to me could understand.

Tell others what to expect from your child;  I used to go somewhere and pray Elizabeth would hold it together until we left, but I should have told others what could happen and to ask for help with Emily if the meltdown did  occur.

For those wondering how to help a special needs mom, here are some thoughts I have:

Try to simply be there for them, invite them to places but try to understand when they cannot come.

Ask the questions you are the thinking, in other words, let us help educate you on our child and their disorders,.

Try to explain our child to your child, that kindness and understanding from your child could make all the difference in the world to our child.

Know that if we could, we would be all the places we needed to be, and do all the things we needed to do.  But simply, we can’t

Call us and see how we are doing, knowing you care, is a gift.  Plain and simple.

Thank you for taking the time to read this, I hope my thoughts and words will help you think of ways to support those special needs moms on their journeys…speaking as one of them…we will always be grateful.

I wish everyone a peaceful week,

Michele Gianetti author of I Believe In You

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