Disclaimer:I was given a free copy of the book discussed here.
When I wrote my post about Sensory Processing Disorder, I was contacted by Michele Gianetti who just happened to have written a book about this topic. It seems there are many similarities between our families: we both have one normally develping normal child, one younger girl who needed to be treated for SPD and one baby son.
"I Believe in You. A Mother's and Daughter's Journey" is a story about Michele and her younger daughter Elizabeth, who has severe SPD and dyspraxia.
But coming back to the book, the thing I like about it is that it is a personal account, not a scientific book. It describes exactly how it feels to be a parent of a high needs child, and to be misunderstood by heathcare professionals.
It describes very well how it feels like to have SPD- imagine you'd put on your scratchiest sweater, put on headphones with the music turned on too loud and look at the sun without sunglasses. Michele can explain perfectly how a normally developing child can watch somebody use scissors and then do the same, but a child with dyspraxia would have to be thought how to use each and every one of her fingers seperately in order to learn the same thing.
I greatly appreciate the way Michele wrote this book: in a very conversational tone- she writes like she speaks. What I also loved about this book is the fact that Michele is always comparing the rather difficult past and the much easier present- Elizabeth is 12 at the time of writing.
Michele writes about how her child was different from her first one, and caused family and friends to be very worried. At the age of 5, Elizabeth was diagnozed with SPD and dyspraxia and before that, she wouldn't speak, wouldn't touch sand or grass with her feet and had many more problematic behaviours. She would have frequent ear infections. Healthcare professionals seemed to ignore the problems. Finally, a family member told Michele the truth: that Elizabeth had SPD.
Thus begun therapies, running from one doctor to another, and problems with finding a proper daycare for Elizabeth. Michele describes how she tried to care for her high-need child with utter devotion. Michele tries to protect her daughter and does everything to make her better, even going as far as to put her hands down and walk to school every three weeks to talk to Elizabeth's teacher.
Her faith and reasoning that you can use everything to help your "out-of-sync" child, helped a lot as well. The amount of work Michele put into helping her daughter is incredible. She would tell Elizabeth: "I believe in you" and push her to get better, and do things that other children do.
Throught the book you see how determined Michele is to make her child feel better and how much love she feels for her daughters- she likes to keep her firstborn Emily happy and at the same time she wants to care for her high-need child Elizabeth. She also uses words such as "beautiful" to describe her younger daughter and avoids saying: "delayed", "retarded" or other negative words.
For parents who have children with similar special needs, Michele also provides helpful websites and ressources to turn to.
If it weren't for a few things, I would honestly say that I loved this book.
First thing is the way Michele talks about vaccines, and it could possibly warn parents to forgo vaccinating their children (Elizabeth was vaccinated and didn't take it too well, thus causing concerns for her parents). However, this, as Michele explained to me in an email, is a misunderstanding and she does support vaccinations.
The same goes for therapies: this is such a typical story of how the mainstream healthcare system failed a child and alternative healthcare provides are often expensive and their therapies controversial at best and possibly not working- this is with the exception of Mary, the occoupational therapist, who provided very intensive therapy for Elizabeth. While Michele often states that this is her experience, and their choices, she may persuade other parents that alternative medicine is the way to go.
Also, I think I see Michele struggling with two things I am also struggle with: one is comparison between the normally developing sibling and her slightly different sister, and keeping a good balance between what a child should be doing and letting the child be herself, and then of course there is the sheer amount of time and effort and money spend in such intensive therapies- what about families who cannot provide these?
Last but not least, in a book called "A Mother's and Daughter's Special Journey", I am missing Elizabeth's voice. I am missing what Elizabeth says about her condition.
With J. we choose another way to deal with her delayed gross motor skills: we went to therapy for a while and then we stopped. We now provide her with lots of movement and try to encourage her to try new things but don't push her. And I can tell you that my little girl (who is vaccinated, and also had a reaction to vaccines) is thriving, as is Elizabeth.
In the end, this is the important thing- the fact that it gets better. And while I agree that there are many ways to achieve the same goal, sometimes I am asking myself how do we know if a or a special diet or a supplement has helped or maybe it was actually the therapy that did the work.
is a registered nurse, who previously worked as a school nurse before becoming a stay-at-home mom and eventually an advocate for her second child, who has dyspraxia and SPD.