This year, the second annual Apraxia Awareness Day is on Wednesday, May 14th and May is Better Speech and Hearing Month.
April marked Autism Awareness Month and based on the things I read online, it seems to be the consensus that there is now plenty of *awareness,* but not enough *action.* In other words, many moms felt that it was pointless for a person to post an awareness picture on their Facebook page and then go about their happy day.
Their frustration was … What are we as a country and as citizens doing to improve the autism epidemic? We’ve got to do more than “Light It Up Blue.”
I know apraxia of speech is not at this stage in the game yet. I still run into plenty of people who have never heard of apraxia. We are still in the murky waters of awareness … figuring out where we are and yelling for help. Yes, we as parents of autistic and apraxic kids alike, are taking action the best way we know how, but it needs to be a community-wide effort … citizens, teachers, government, speech therapists, and doctors all working together.
How long will it take to get there?
The first Autism Awareness Day was in 2007, so these parents are a few years in. I would assume that everyone in this country has heard of autism and I agree that we need to transform out of awareness and move into action. After all, the latest CDC statistics show that 1 in 68 children have autism and for boys, the numbers are even greater … 1 in 42.
What are the current apraxia of speech stats?
We have a sketchy number – 1 or 2 children per 1,000 – but nothing definitive. Is the CDC questioning parents about apraxia? Not that I’m aware of. I’m assuming it is a supply and demand problem. Too many kids with problems and not enough time or resources to help them. After all, does the CDC have time to report on apraxia when we have epidemic autism stats and ADHD weighing in at 11 percent?
I suppose us apraxia folks are clumped into the “developmental disabilities” statistic and the CDC last reported those stats in 2006 – 2008. Six to eight years ago. And the stats then were 1 in 6 kids have a developmental disability. What are the stats now in 2014? I’m assuming this number has also compounded and become more prevalent among today’s children.
There is a problem.
What are we doing as a nation to lower these frightening statistics that continue to increase year after year? What can we do to ensure that apraxia parents don’t feel like the autism parents do seven years after the founding of our awareness day?
I certainly don’t have all the answers, but I do have a few small steps to get us moving in the right direction.
First, have you registered your apraxic child on the CASANA research registry? This is something simple that every parent can do and it is something that SLPs can recommend to parents. Our cases need to be documented. The CDC and the government is not doing it. It is up to us as parents to submit our information so that a few years from now, CASANA (if they choose) will have the ability to draw some conclusions.
Second, visit CASANA’s page for ideas on ways you can pay it forward on Apraxia Awareness Day.
Last, I have a personal project that I would like to get started.
There are a handful of parents who have tested their apraxic child for nutritional deficiencies. This type of testing is typically done by a holistic/integrative medical doctor. A diet and supplement plan is created based on vitamin, mineral, and amino acid deficiencies, food allergies, sensitivities, and/or gut issues.
If you have explored this route with your child, please contact me via email at firstname.lastname@example.org. Or, if you are part of an apraxia or biomedical Facebook group, I’d greatly appreciate it if you shared this request. I have a brief survey that I’d like for you to fill out. I do not want any personal information from you. I don’t want your child’s name, birthday, or where you live. If you have explored this route and have seen no results, I still want you to contact me.
I feel that this has been a big part of Jake’s accelerated progress, but I’m curious if other children have experienced the same results. No one is documenting this piece of the puzzle. I want to provide unbiased information in my blog posts and I’d like to compare a group of these children receiving this type of treatment.
I have lots of good material lined up for the month of May and I will be posting a few times a week. You can expect my usual posts, other parent perspectives, an expert opinion, and a giveaway or two. If you are not a subscriber already, now would be a great time to sign up to receive these posts in your inbox.