I’ve spent the last few weeks researching chromosomal deletions. What I’ve found on my own far out weighs the feeble amount of information given to me by my son’s pediatrician.
It’s moments like these I realize how very lucky I am to hold an Honors Degree in Research and just how lost in the ocean of misinformation my son and I would be if the only understanding we’d gained regarding his condition had remained the ‘oh don’t worry’ scenario offered by our rural doctor.
I now understand the pathways that his chromosomal deletion travels through his body.
I now understand that his Intellectual and Developmental Delays, his Ataxia, Nystagmus, Vertigo and Dyspraxia and even perhaps his Autism may all be due in part to his chromosomal condition.
And that whilst there are no cures, there are some medications that will ease his symptoms.
For years our Doctor’s have insisted on treating my son’s multiple conditions as separate entities and for years I’ve insisted that what we needed most was an holistic approach.
One that incorporated all of his conditions into one overall understanding of his needs, as opposed to having to constantly deal with splintered bits of information derived from ‘experts’ who were each working in their own disparate and seperate ‘specialized’ fields such as Autism, Speech Pathology, Neurology, Physio Therapy, Occupational Therapy and all the rest.
None of whom ever seemed to know or agree with what the others were saying .
Now I have answers.
Now I have an understanding that runs deeper than mere speculation or partial confirmation.
Now, for the first time in what has seemed like an eternity of uncertainty, I know that my son is safe.
He’s safe because I understand what is happening to him.
He’s safe because I am willing and able to read the latest research from several disparate fields and link all of his symptoms together into one very clear and coherent whole.
A whole that has now been confirmed thanks to genetic screening.
He ‘s safe now because instead of waiting for our Doctor to get around to reading the latest research journals, or choosing to put off a treatment that could ease my son’s vertigo by making us wait for months and months to see a specialist (it’s been over 6 months now that we’ve been waiting for a neurologist appointment) I am now able to walk into our Doctor’s office and ask for the medication my son requires based on the information I’ve found in sound scientific medical research.
As extraordinarily grateful as I am to finally have reached a point where I can now fully advocate for my son’s needs, I can’t help but wonder just how many parents there are out there, who do not have the skills or the awareness of the vast array of medical research from legitimate studies, now available on the internet?
I know if I hadn’t looked, or even have known what to look for, no-one would have handed me the information.
It’s taken months of locating appropriate research and cross referencing that research with other studies, to reach the understandings and conclusions that I have.
I want to share that information and enable other parents to go forth and research and to trust in themselves and the answers that they find.
So please, if you know that your child needs more medical assistance than they are receiving, or feel that you’re not being given a clear enough understanding of what it is your child is experiencing, then trust in yourselves enough to ask questions.
Go on-line and research.
Even if the only search terms you can type in are nothing more than a list of symptoms and a hunch, give it a go.
And that’s not to say that you should instantly believe everything that you read but rather that you need to check and cross check everything that you read.
If the same terms and suggestions keep turning up in your research then dig further into them.
If you don’t understand the lingo or specific terms used in journals, jot those terms down and when you have time (yes I know time is valuable) then go back and look up those terms, write their meanings down, and I guarantee you the next time you see them you’ll know what they mean.
You may not understand it all right away, but you will understand some of it, and each new piece of information you digest and understand will lay the foundations for the next piece and the one after that.
Until eventually you build up a wall of knowledge that is your very own and can never be taken away from you.
Please remember that even an expert on Autism or any other condition, is not an expert on your child.
You are the expert on your child.
No one else.
So image the things that you could do to benefit your child with more information.