I'm starting this blog to help me see where we have been and how far we have come. Having a child with Non-Verbal Learning Disorder, NLD for short, I have encountered many new things along the parenthood journey. I suspect every parent feels that way in their journey as we all face different challenges but this is my story told in a way that only a mother of five adorable red-headed ginger children could tell.
I'm thinking that the theme for this blog will center on some of the key NLD moments we have encountered. I want to pinpoint the essence of NLD, my need to look at things with a different perspective, but most importantly after all the trials and failures, we must share the successes we have achieved. We will define NLD in the way our family has interpreted the official neuropsychological assessment and the process we went through over the last ten years. We will add variety to the mix with the birth of each additional sibling and then face the challenge of another child with a neurological condition that appears strikingly similar to our NLD boy.
That's probably a great place to begin with, the here and now. Going through anything the first time can leave you shell-shocked, like bringing home your first child, enduring the first night at home together as a family of three, unshackled from the caring hospital staff you look at your spouse for the first time and think, "Now what?" But you manage and fumble through, definitely sleep deprived but not broken. Then down the road you handle bumps and scrapes and you become more comfortable in your role as a parent, confident even. And it is no different parenting a special needs child, except the bumps sometimes feel like mountains and the confidence comes from voraciously reading and searching key words, terms and phrases all over the internet until you become a fountain of information. Some of it is useful other bits are pure rubbish, but you have to find out more and more because maybe this one thing would help ease the tantrums or maybe if we handled this situation with this knowledge things would be different. In the end you find your way and you are able to walk steady. And just when you are feeling pretty good about things well, there’s the sucker punch. It happens again, another child another feeling that something is not ‘quite right.’ That is the state I’m in right now, just past the sucker punch, still feeling the burn, trying to shake it off, and trying to stand back up again. “Look at the video.” Those words ring in my ears. They were spoken by my sister. After spending the afternoon with my youngest daughter and her occupational therapist I called my sister in a funk. The OT and I chatted for over an hour where she outlined all her concerns including concerns about the road that lies ahead. All I could think was we have been here before, not again. And my sister uttered those words, “Look at the video.” When our daughter first began the early intervention program at 6 months of age I somehow managed to shoot little video clips of nearly all the milestones she worked on. I say somehow managed because it really was not intentional on my part. At about 20 months she was scheduled for her annual review. It was then that a light bulb clicked on in my head. Using all the various clips from the last 14 months I was able to string together a short video that I shared with all her therapists and case manager at our meeting. It was my thank-you to them as well as a ‘see how far I have come.’
“Look at the video.”
That was my sister’s way of reminding me while at the moment things might look bleak, it is the bigger picture that counts. So here is the video that tracks the progress of one determined little girl, her siblings and parents and a tremendous amount of success.
