Overcoming YOUR tiny obstacles

It makes me so happy to receive emails and read some comments from some mothers who come across this blog looking for some answers after hearing the words Ocular Motor Apraxia. I find it very interesting and informative to read your stories, but, this blog was meant to inform other parents, so I feel that keeping those stories to myself isn't fair. This is why I'm launching the series: Overcoming Your Tiny Obstacles.

I would like to ask you, yes, you, the mother or father of a child with OMA and/or severe developmental delays, and I also want to ask you, the teenager or adult who has/had any of these conditions, to share your story with us. I would like you to use this platform to share your story.

To do so, I came up with a format, to have some sort of continuity and to make sure we get the most basic information from everyone. I will ask you to please follow the format described below as much as possible, and to send it to me.

1. Introduction - 1 paragraph. Begin by mentioning whether you are a mother of, grandparent of... or your are the one with OMA/developmental delays. Include your child's/your name, or, if you prefer to remain anonymous, you can use a nickname. I do ask, however, that you include the country and state/region you live in. Tell us what's the medical diagnosis.
2. Background. 1-2 paragraphs. Tell us how and when (age) did you find out about it. Tell us what type of testings you got done, and the findings in regard to the causes, if you know them. Let us know if any of your health issues also run in a sibling or any other member of your family.
3. Issues. 2-4 paragraphs. Tell us all the issues related to the diagnosis. Does your child have speech delay? Hypotonia? How these issues affect your child's development in the house, at school... in his daily life?
4. Eradication. 2-4 paragraphs. Tell us what are you doing to ease the symptoms. Do you take/took therapies? Have had any surgery? What specialists have you visited? Vitamins/supplements? What has worked for you and what hasn't? Has any of symptoms disappear or has become less severe on its own as your child grows?
5. Conclusion. 1-2 paragraphs. Anything else you want to add.

I hope you take a moment to share your story. Use this forum to let us know how you are helping your child, or to tell us how you are doing after having any of these medical conditions. Ocular Motor Apraxia is a rare disorder, so we need to use tools like this to connect with others in our same situation, and to inform those who are looking for answers to something that the medical community knows so little about.

We can't wait to hear from you.