I love that expression!

Not because we are out playing football and not because any of us actually are punters. But because it means you simply have to be flexible in life and have a plan B.

Or C

Or D

For those who have special needs in their lives, we can find ourselves sometimes at plan AA, if it is an especially tough time.

I think having a child with special needs makes you so adept at being flexible.

I did not start our flexible at all. I LEARNED how to do it with time and experience. So many experiences taught me that it did not matter if I thought I could do all the errands AND then meet my friend to have a play date. I quickly learned that maybe just the errands would get done.

Because all that activity was too much for my daughter, Elizabeth to handle. Elizabeth is my beautiful daughter who has special needs. She has global dyspraxia and Sensory Processing Disorder ( SPD)

And when she was young, I NEVER knew just how much of an outing she could handle, but I would find out in the long line at the grocery store and have to hold her and unload or leave the store with her crying.

We never knew exactly what she liked or didn’t like until we DID and usually in a NOT good way.

But as life has gone on and the years have passed we have learned flexibility and how to plan things in a way that always allows for a plan B.

Like the time 3 years ago, we went to this wonderful Christmas event. Prior to COVID, it was so crowded and loud and Elizabeth was handling things great. Until she wasn’t.

Until the moment when the tour guide said that we needed to walk through this cool room with spinning lights and and music. It was kind of dark and well, if you know Elizabeth, you know that the dark if her ENEMY!

So as much as we encouraged her, her yelling out to the guide “I am not going through that” made us be flexible and go to our plan B.

Yep, we have learned!

So flash to current day and we are now close to 2 weeks away from the time she is set to begin her training at the nursing home. See previous blogs for the full details, but suffice it to say that worker shortages and COVID made the place put a hold on her training.

This was fine and we adjusted her schedule as we waited.

But then Elizabeth started to verbalize how nervous the place made her. That it was overwhelming and too much to learn right away.

So I checked with her job coach who said that even she was struggling to keep it all straight in the kitchen and that if they could train her SLOWLY and one thing at a time, she could do it and be fine.

But as we all know, not all things bend our kids way and the nursing home, is wonderful, but they simply can’t do that. So it is training with a job coach one or two more times and then she would be there mostly on her own.

So with all the onboarding we did, fingerprints and drug test, job coaching and the like….

We have to punt on this one.

Exercise the flexibility we have done so many times before.

And let the nursing home know that her feelings have changed and why.

I think they will understand that for now, we need to hit the pause button again. The difference is we are doing it not them

Do we have a plan B?

Yes we do and I will share that with you soon!

I wish everyone a peaceful week!

Michele Gianetti author of Elizabeth Believes in Herself

I don’t always let it in.  

Those who have special needs children know what I mean by the “it”.  

The “it” is the realization and recognition of just how hard each day can be for our children.  Just how much they have to work each day, just to get from morning to night.  I think if I let “it” in daily, I would drop to my knees and want to cry because I would love to give Elizabeth the gift of easy days, days that you and I have, days that typically developing children have.

Days where she can say “yes” to playing tennis with her brother, instead of working hard to swing the racquet.

Days she can say “yes” to a movie, instead of having anxiety or days that she can take the car and drive somewhere instead of talking about how she will one day learn to drive.  You know, I am sure, all about the easy days you would wish for for your child.

“It” is a lot.  “it” is the biggest small word there is and I let “it” in this weekend.  Probably because we had a quiet weekend, where we could do anything we wanted and it was then that I realized our son had 17 things he wanted to do and Elizabeth and I had trouble agreeing on some things we wanted her to do.  Mainly because of her dyspraxia.  

So here was our son zooming off to his own things and over here was Elizabeth slowly agreeing to do some things.   She did participate well in what she planned and, she did have fun, but the motor planning involved is tiring and at times overwhelming.  Her sensory processing disorder or SPD, affects her participation as well.  

But Elizabeth and I have spent many an hour talking about trying things, why trying is a good thing, why saying an “NO” right away is off-putting, why we ask her to try and it is because of this talking that she know we are there for her, to help her and that we believe in her and we want her to be with us in all we do.  It was right then that I let “it” in and my heart hurt, my eyes teared up and I wanted to scream in frustration that fun days are still work for her.  That she has to work all the time.

And she tries….hard!. 

And she works hard!. 

And she is succeeding.

But it is work.

 I had someone ask me a question at a lecture I was giving and it was Would you ever wish Elizabeth was like your other children? I remember my answer and it was Would I wish she was like my other children?, NO, I would not because the gifts of Elizabeth are amazing in our life,  Her love, gentle ways and peacefulness are wonderful.  Her love of life is contagious and she is our greatest teacher about life.  So, No, I would not wish this but for her, to have the typical neurological system of her siblings?, to have things come to her easily? to take this hard work from her?  Then YES!, Yes, I would wish it.” “For her!”   I always remember this question because it was more honest of a question than I have ever had asked and it really made me think.

I share this now because “it” got in this weekend. and after such an emotional time I want to share because maybe somebody needs to read this and know that they are not alone, that someone else is feeling the same thing.

 Elizabeth always know that we are so very proud of you, each and everyday.  That you aee so special in your strength and drive and that we love you and believe in you so very much.

I wish you all a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself.