A Review by Jean Hall for Readers’ Favorite

Reviewed by Jean Hall for Readers’ Favorite

Raising a special needs child seems to be like nurturing a rose with many thorns. Holding onto the stem is painful, but the bloom can be spectacular. Michele Gianetti, R.N., writes I Believe In You and she shares her worthwhile, but sometimes painful journey. Michele and her husband John bring Elizabeth into the world, along with their other two children, Emily and Michael. But Elizabeth is different. After a time of denial there is a diagnosis — dyspraxia and sensory processing disorder. There is lack of coordination for dyspraxia. And there is heightened and disordered reaction to sensory input or stimulation. Elizabeth must constantly be calmed and held to soothe her exquisite nerves. There is crying and screaming at the smallest change in physical circumstances, visual cues, or temperature. Michele tries out different types of therapies in a kind of deliberate chess game. Ever so slowly, progress is made.

Michele Gianetti makes a slow introduction to her parenting and medical tale. It seems necessary to explain some of the medical terms and circumstances in order to fully appreciate her family’s life. Then the floodgates are open and the book seems cathartic for this courageous mom. This special story of a mother and daughter’s journey has many practical resources for families in similar situations. But Michele’s insights and care in observing her daughter’s challenges could be applied to more ordinary behavioral challenges. The table of contents is helpful for reference after the book is read. Michele Gianetti’s I Believe In You is a master course in intelligent and spiritually-based parenting.

The Fall Can Be So Long

Weird title….right?  I know but it is what came into my mind today as I stared at the blank “Add New Post” page on my blog….I started thinking about Elizabeth and about her week and this is what came to mind.

I probably need to give a bit of backround here so that you can understand.  When Elizabeth was younger, say about four years old, we had been in therapy for about a year and a half.  This being said, Elizabeth was still so affected by her Sensory Processing Disorder (SPD) and dyspraxia.  She would still cry and meltdown, show frustration and scream. But due to the therapy and the work we were doing at home, we were seeing these successes she was making.  New things she was doing, syllables of words she was attempting to say, moments when she would handle something or some situation better that we could have hoped.  Yes, we were seeing good things.  We were working hard with her but we were seeing good things.  Well this is where the whole “drop” thing comes into play.

I was usually so excited to see any positive change that I would laugh, rejoice and probably even clap or dance depending on the change and the level of privacy we had at that moment ( a mother dancing in a restaurant would certainly be cause for security to be notified) so it was like I got so lifted up by her success that when she had a stumble or meltdown or the next time she did NOT handle well, the same situation she had previously then I felt the fall…..the fall back into reality….the fall back into realizing that we are still on this journey and it will not be smooth.  the fall back into realizing that our work, while positive and her growth, while present….does NOT make her disorders go away. (Hard to believe that given all we had been through that I would think suddenly all would go smoothly….but when you want something bad enough you wish you could will it to be true)..The fall that reminds you yet again, that there is more work to be done and more support to be given….. Yikes, what a fall that is.

I don’t think we can really help it, I mean we want the best for our children so when the achieve something, we are their cheering section.   But if you take that fall enough times you can begin to hurt, you can start to realize you need to focus a bit more on “self preservation” Perhaps preparing yourself in certain ways for the fall.  I did not come to this realization on my own, it was my husband who  said to me one day that he hated to see me get SO excited over something Elizabeth had done,  because he hated to see how I looked and felt when the fall came.  So I have learned to laugh just as much, cheer just as loud, dance when I can (again the privacy thing) but all with the mind set that these successes and growths and the potential stumbles and setbacks are all part of the journey.  That a stumble or meltdown, five minutes after we just high-fived, does not mean we have to take the fall, just that something might have happened to overload her system. That her struggling with opening a container, one successfully opened just the day before, does not mean we have to feel the fall, just know she might not have been able to process the steps right then to open it….  all this to me means , that she is succeeding, but that she is the child who has these disorders… for forever,and they will affect her days….and that by understanding them and how they affect her will help Elizabeth as she continues to grow.

Taking the fall hurts, it is like skydiving and trying to land with a hole in your parachute…it hurts.  But knowing your child and how they work…helping them to understand their disorders and working together can make the fall less painful.

I for one cannot give up rejoicing and cheering on each success just to avoid the risk of the fall…..Right now I am rejoicing at the week Elizabeth just had….she was organized…pleasant…on task…happy and talking just beautifully,  I was home alone with her so we DID dance! and I am so proud of her…..Yes right now I am rejoicing and I am not afraid of the fall……Hope you all have a good week.

 

Happy New Year…

I am writing this post a bit later than the actual day of New Year, as we were on vacation last week.

We took a vacation to the beach, a LONG car ride to the beach….we had not been away in a while and as I am who I am, I did quite the bit of reflecting and comparing of where we (Elizabeth and her life)  were last time we went to the beach…to where we are now.   I know, wouldn’t it have been nice if I could stop this, but I know that the odds of that are pretty much nil.  So with that said, I have nice list of positives and a list of constants.  I won’t say negatives as I have come to see that certains parts of what affects Elizabeth’s day and life are really things that are just “HER”, personality traits, temperament, sense of humor etc…

I watched her and enjoyed seeing her enjoy the ocean, beach, waves and breeze…all such good sensory inputs.  She does a move when she is really enjoying the ocean that we call her “Moses pose”  arms up and out to the side while facing the ocean, her feet firmly in the sand. Kind of like she is parting the Red Sea….she LOVES all that the ocean brings.  She has a great laugh and we heard it so often when she was in the ocean.

But something I have learned on this trip, is that so much of what I see in Elizabeth, perhaps things I have even thought we could attribute to her disorders of SPD and dyspraxia, are just really parts of her personality. Things we maybe wish we could modify or that would we wish would disappear are simply part of her!  Just like there are parts in all of our personalities that we wish could be changed or disappear, but probably won’t. Perhaps, for me, I could work on being a bit less OCD before we pack for a trip…such as making the house tip on its side to find the one thing I just KNOW we will need…. This whole personality things is actually something I had mentioned to Roe, our beloved friend and tutor and she agreed. We laughingly said if Elizabeth did not have her disorders, we know that she would just be a typical…dare I say, “moody teenager”  Sometimes, as you know, it is hard to separate typical behavior from behaviors caused by their disorders.

Elizabeth did let us know when she was tired or needed a break.  She let us know when she wanted to go somewhere and she definitely let us know when she did not like a place such as the outside art show we walked through.  Want to know how many times I heard  ”This is fun, right Mom, we should probably go now” or ” This has been fun, are we ready to leave yet?” plus four or five other versions of the above.  Well I would say probably 25 would be a fair guess.  We did leave and do something she wanted …I think it was get ice cream but my thought here is SHE did not like the art show…her SPD and dyspraxia  had NOTHING to do with it.  SHE did not like it.  I know you are probably saying.”OK, Michele, she did not like the art show, we get that already”  But my point is maybe somewhat of an “Ah-Ha” one for me.  I think I have spent so much time watching and thinking and assessing, then planning a new therapy or adjusting the old, that I forget to factor in to the equation the part that is simply HER.  I need to do this more often.  I learned something on this trip.  I guess because Elizabeth arrived on this earth wired in such a complicated fashion, we are in the habit of  looking at her disorders to explain many things…so now perhaps is the time to look at the part we overlook…which is the “simply HER part.

I was not looking for a New Year’s resolution at all when we went on this trip, but I came away with one…so that is not a bad deal after all. I wish you all a good start to the new year. May you have a moment like mine to guide you a bit more on your journey with you child. And may you and I keep learning…..

Just like I learned that art show are a big no-no….have a good week