When I first had Elizabeth, I was in awe of all that curly hair and those amazing blue eyes. (thank you for the genetic gift from my husband) She really was an absolutely gorgeous baby.

And then she would cry.

And cry.

But we always went places and did life with her, but we knew she would cry or have a meltdown when her sensory processing disorder (SPD) would show itself.

It was hard.

But something I did was to make sure that outwardly all was in great order for her before we left the house. We did her pretty curls, picked cute outfits and made sure her face was clean.

ALWAYS! even when we went to the park?

In fact, she used to smell so good going to first grade with her perfume that one of the teachers actually asked me what she was wearing.

We wanted the world to see the beautiful child that we knew she was. Inside and outside. And we didn’t want her disorders to be the thing that was noticed the most. And we also wanted any and all who worked with her to know that she was LOVED, alot!

It was always hard to see her cry or break down in public and look at the pitying faces of those in the store or line with us. But it was equally or even more hard for me/us to keep things in good order for her.

With her special needs of dyspraxia, she would spill, eat not so neatly and have smudges on her face. We would be quite hyper alert to all these things.

So as time passed, we have watched Elizabeth grow and mature and succeed in her life. We taught her so many life skills, but the one thing that was hard to do for me and it stems back to these previous things that I shared with you, is to let the natural consequences happen for her.

I still want to run interference, to save her from say, the looks if she is has a stain on her shirt or to make sure she is up and organized for the day, to make sure she eats breakfast. To make sure that her schedule is completed for her, so that she doesn’t miss something. To just help make life a bit easier and smoother for her because she has to work so hard at it everyday.

Now don’t get me wrong, I don’t DO all these things, I am the reminder to HER to do them, But it is like they are still in my mind.

Now flash to current day, she is 24 years old. She is capable beyond words but also needs supports to be this capable. And yet, the reminder girl ( me) has not be able to relinquish this job.

I want to.

I try to.

But somehow, I can’t and it probably has to do with the fact that Elizabeth is conditioned to know I will be there to remind, help or if we are PRESSED for time, do for her.

But I have learned this year to allow natural consequences to occur.

Yep, small natural consequences as this will, I was told, teach her better than any words I can say about the importance of any of the above things.

It happened with breakfast as she didn’t listen to her timer, I did not run interference, and she got up late. So she had a protein bar for breakfast. Not a big fan favorite of hers but it got the job done.

The next day, guess who was up and ready?

So, I am a work in progress to pull back and let these small natural consequences occur.

I have to say that as the weeks went on, it is NOT easy to allow these to occur. I mean do I want to see Elizabeth go out of the house with her hair not brushed or a stain she forgot to wipe off? No!

Not at all.

And also, there are times that doing it quickly and on my time is what has to happen because of other things going on in life. It is kind of a self preservation thing. Being “trained” to be so hyper aware of Elizabeth’s needs, makes it hard to deprogram this setting.

I am working on the above goal

Is it easy? For me? 100% NO IT IS NOT.

But is it important for her next level of growth? 100% YES IT IS.

I see that so clearly now.

I see so much growth, happiness and pride in her as she sees all she can do without THE REMINDER PERSON. She is capable, smart and strong.

So for those of you who run so much interference that you actually get a training heartrate going. ( Me, included) Just give it a think. Maybe it is time to see if this might be a fit for you and your special needs child/young adult.

I am with you if you are scared, but I see the results and they are so sweet to watch.

I wish everyone a peaceful week.

Michele Gianetti author of I Believe In You

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Happy New Year to everyone! I think it is still okay to say this because this blog is starting out the year.

We had quite a nice holiday break. Christmas week Emily was home, sick, but home and that made it a nice week together as a run up to Christmas. She had to leave late Christmas day to fly back on the 26th. Which was TOUGH on everyone.

The next week, Elizabeth’s Dad was off so that made things still fun and holiday-ee

I will say that Elizabeth, for the FIRST time in recorded Elizabeth history, really had NO overload or emotional moments and she enjoyed whatever it was that we were doing.

It was really quite nice to see her simply enjoying time and family because, for us, that is really the most important things. Especially as we had Emily for such as shorter time.

Although I don’t know exactly what formula made all this flow so well.

I do know that she is maturing in her approach to things in life, is a BIT better at being truly flexible and we rediscovered the need for her and I to have our “Chat times” more often. So it was likely a combination of the above as well as the fact that, unlike other years when she had such open ended days, we worked hard on making sure her schedule was busy with things she wanted to do.

For Elizabeth and her disorders (global dyspraxia, sensory processing disorder SPD) open ended time is very anxiety producing. So while we all breath and enjoy the nothing or little things of the holidays, Elizabeth sees that as fun…for a bit, then she sees the void of nothing on her schedule and then she is becomes anxious and irritated and and and….

I wrote a previous blog about us being very proactive, when we know a schedule will be changing, to have other things to put into the schedule so that great big voids of time are avoided.

Happy to say that we remembered that and it did make a difference. Which makes this something that we both will be making sure is remembered and done next time a break or vacation is in the future.

So as we finished up the successful holiday break, Elizabeth and I were thinking about the next week. Which was the first week of January because in this week she was scheduled to have another training for her new job at a nursing home in the dietary area. For those who don’t know, Elizabeth loves working with the elderly and cooking and preparing food that this was a good fit. But there is ALOT to this, so she needs a job coach and more training times than others before she can start without a job coach and semi-be on her own.

Which just honors how she learns and who she is.

Now flash to the day at work this week. Her job coach told me that things were tough there at the nursing home. Low staff, increased tension and the worker who was supposed to step in after the job coach was done is now pulled to a different area for the next long while to fill the vacancy created by people quitting their jobs.

So where does that leave Elizabeth and her new job?

Not sure really. Except that she will not be continuing the job coaching as there is no purpose at this point because the natural segway to part 2 of the training won’t be there.

We are in the process of talking this through with the head of the dietary program who is lovely but who is stuck in this tough situation.

So now the schedule we had for the next while is now void. BOOM! It is like in a second it turns to dust.

And like the title says I am always amazed at how quickly this can happen and how the adjustments and clean up become what we have to do for our children with special needs.

So,Elizabeth and I will be talking through the reasons for the change, what we will do in lieu of this training and all the emotions she has about this change because she was loving the training.

Seeing the success of the holidays and how some of those changes and adjustments we made helped, makes me know that we will use those tools to help with this current situation.

We have never been at this exact spot before, so it is new territory.

Elizabeth has never been just exactly who she is now in this situation before, so that is new.

Sure, we may be 25 years into this journey with Elizabeth, but we are still a work in progress and that is just the simple truth.

For anyone who might need this today, I hope our story helps.

We all work hard for our children with special needs, and since that won’t stop, we need to know it is okay to still be figuring things out.

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes in Herself

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