I decided I would just come write out and say it. This is my first post here at The SPD Blogger Network, and hopefully, the beginning of many, many writings on this journey of embracing our new family reality of raising a child with a hidden disability. I have written of this possibility since almost the day he was born on my personal blog since the day of his birth, but not much, and not for a really long time.
My Sweet Jax has an initial diagnosis of Fetal Alcohol Syndrome. To say it’s been hard actually getting to the point where I can say that out loud, much less for medical professionals to say it to us, well, that is an understatement. And a long journey getting to this point where we have to face this new reality as a family.
Hearing this initial diagnosis in late December of last year really hit hard. It’s not completely unexpected, but you know, you always hope that there will be some “lesser than” or “more treatable” condition that might come with the effects of prenatal exposure to alcohol and other multiple substances of unknown quantities. But finally, after a couple of years of trying to get the local organization who is supposed to be screening at-risk children’s attention to no avail, this doctor finally took us seriously after I finally decided I had enough of hearing “oh it’s nothing” and well, even though it is hard to hear, it is a relief to know.
The diagnosis process isn’t over yet by a long shot. In fact, thanks to a very overloaded health system (in Canada it is government run, so a bureaucracy makes the decision about where money is invested in the system) that is especially underfunded in relation to mental health, Jax now sits on a waiting list that is 18 months long. He is scheduled for evaluations the Summer of 2012, which official evaluation and diagnosis in September 2012. That is a LONG WAY OFF. And the FAS clinic here can’t really do much until they have something official to go on. It’s hard knowing the doc says this is what it is, and then, not being able to move forward in accessing all the supports our son needs.
Thankfully, the school system can move forward and have. Because of the initial evaluation by Doc F, and her concerns for him behaviorally and emotionally, we have been able to get some funding that offered Jax a complete occupational therapy evaluation already, as well as an aide in his preschool classroom for the rest of the year, regular OT (occupational therapy) work in the classroom, as well as home visits to help Hubby and I continue to build on what has become a very scheduled life to keep Jax from having an over abundance of meltdowns and stress.
The OT evaluation found him to be “different” (as opposed to typical) in every sensory area. Hopefully with time, and enough seminars and reading (is it ever enough?) I will go into what this all means, but I’ll just say this… knowing that many of Jax’s issues are sensory-related helps make sense of so much of what we thought was just “quirkiness”.
And knowing these things offers us tangible avenues to help him, or at least to give him more grace when he is put in situations that are over-stimulating, that his over-sensitive body and brain can’t handle. It’s like he gets overheated at times, and just like the radiator of a car, when that happens, he has to blow off some steam. That is his reality. That is OUR reality.
As with most things I share on my blog, I have been in turmoil about whether or not to share this part of our story. I’ve said, in the past, that the last thing I want is my son labelled as a “drug baby” or something like that. But I also don’t want anyone to believe for a minute that I am ashamed of who he is because of how he acts sometimes. That couldn’t be further from the truth. He is himself, and that includes all that is hidden from view from the world in general, and even his Momma. He is who he is WITH the hiddenness, and because this all happened to him before he even took his first breath, and I love him to the core…madly, painfully, deeply.
But I also won’t lie about things, most especially to myself, anymore. He is more than “just” a boy with alot of energy, or “just” high spirited. He is not a child out of control as some have described. He is dealing with real issues here, and now, as his Momma, I have to face them too. Our whole family does. And this affects the way we live, the choices we make about just about everything.
Part of NOT denying is realizing that a diagnosis is not the end of the world. It’s the beginning of getting him all that he needs to become the young man he was created to be, and that he is becoming in spite of this struggle. It doesn’t change my love for my son, or the essence of who he is. It changes how I see him, and that is a blessed good thing. No longer struggling against what feels like defiance, but rather embracing my pivotal role in helping him make the re-connections that alcohol or other substances caused before he even took his first breath.
So once again, it seems I’m injecting another dimension to what I write. I am now Mom to a child with special needs. To say I’m overwhelmed with it all is an understatement. I feel very lonely in trying to organize how to move forward, or even work through all my feelings related to what was done to him, and how it changes him and me…us. I feel piled on right now, and wondering how we are going to see our way through. But as I said, it is not the end of the world. We will see our way through.
And there will be, I should say IS, so much to be thankful for where Jax’s health is concerned. Unlike many kids on this spectrum, he sleeps well, and for now, has manageable (although exhausting) meltdowns, and is physically and cognitively on or above par. Not to mention he’s hilarious alot of the time, and draws the love of those around him without really trying very hard. And he has what we call his ‘church face’ which means more often than not, he copes much better in public than he does at home. Even though it wears on his Momma, it still means that at least for now, school and church are enjoyable relatively speaking, if you can disregard the need for constant vigilance and management enjoyable. And often, once he gets there and wraps his head around the fact he’s there, he finds a way to make the most of it. And if he can’t, we’re continually trying out things to help him through. So there are so many good things, and we celebrate God’s protection of his wee brain in those areas. And trust God to give us wisdom and grace through it all.
And hope… we can’t get far without hope can we?