Ah, today was awesome! Today my son was running around in the back yard. Running for Jimmie is a stimming activity. He is in his own world. He loves it! It's a happy stim, but it is a stim none-the-less. I have seen him grabbed up by his father and whirled around while running and seen a response, laughter, giggles, but as soon as he is put down, he runs again. I don't mind it. It just is what it is. But today, well, today, he was running, and he looked at me from across the yard. He made firm eye contact. He smiled. He ran at me. He ran to me. He flung open his arms and threw himself into my waiting arms. And I saw it coming. I saw it from the moment his eyes locked mine and that smile spread across his face. It was brief. A short hug and back to running. But my God, it was an awesome moment.
What do we live for but moments like these? And I appreciate them so much more than the Mom next door. She gets them all the time. She cherishes them to be sure. I don't doubt her motherly love. But I don't get them all the time. Well, not from Jimmie. Charlie makes a game of it. But Jimmie has never done that. Ever.
I have never before seen such clarity in his eyes, certainly not combined with purpose and love and joy. These are things that rarely register on his beautiful face. I see purpose when he goes after a straw, but I also see that he sees absolutely nothing but that straw. I am invisible. Even the drink the straw is in is invisible. He sees only the straw. I have seen joy. He is often happy. I have seen love, when he happens to find himself looking into my eyes. But today, all these things combined.
And I swear for that brief moment it took him to cross the yard and hug me, he was a normal 5 year old boy. No sleepiness in his eyes. No overly medicated droopiness. No cognitive disconnect with the world. He saw me. He had a purpose to hug me, but he was not blind to the rest of the yard or to his running or to the wind blowing in his face. He was happy. He was present. He was 5. It was amazing and wonderful.
It makes me want to get him weaned off some of these medications. I want to see more of that little boy. I want the seizures to stay at bay. I want so much... But I'll take the moments as I get them. And I will rejoice in them. And I will cherish them. And I pray I always remember that moment.
Saturday, October 15, 2011
Wednesday, October 5, 2011
Special Needs Hierarchy?
I just watched a wonderful news story. It was full of heart and generosity and love and it slightly pissed me off. See it was about a playhouse for children with Down Syndrome, a fun place that advocates for Down kids and provides vestibular stimulation, developmental therapy, and social interaction. Down kids. My LGS son doesn't have Down Syndrome. So he can't come and play in that neat place and meet those neat people and benefit from all they have to offer. Somehow that just doesn't really seem fair.
Don't get me wrong. I'm all for advocating for children with Down Syndrome and for helping them to reach their full potential. I believe with all my heart they are wonderful children who deserve the very best we all have to offer them. My cousin Joe Joe had Down Syndrome. He was a loving man child, who remained mostly non-verbal his entire life. He could say a few words. His name. My name, which came out Gunna. Hot Dog. Ice Tea. Mom. Dad. Bubba for brother. He had a great sense of humor. Once when my father was chasing my mother with the running hose, she screamed for help from Joe Joe. He was her cousin as well. Her uncle was married to my father's sister... but let us save our convoluted family tree or ring or whatever it really turns out to be for another time. Joe Joe stood and stared at her wordlessly for a second. Then he did his best body builder pose and growled like the Incredible Hulk. My father had caught my mother and was dragging her back to the hose, but as Joe transformed into the Hulk, my father dropped my mother in a fit of laughter, and Mama escaped into the house laughing and singing her thanks for Joe's brave rescue of her. Joe Joe played with my sister and I daily as children. He is ever-present in my early memories. I spent my life defending him from bullies on the bus, and I openly hugged and kissed him in view of my friends and told them all to leave my boy alone. I loved him as if he were a brother, a friend. I only ever wanted the best for him. And he deserved so much more than he ever received.
But Down Syndrome is not exactly rare. The prevalence is 1 in 800 live births or 1 in 971 children aged 0 to 19 (http://www.medicalnewstoday.com/releases/172493.php). Infantile Spasms, of which 49% of LGS cases began as and which is how Jimmie's epilepsy began, has a prevalence of 1 in 2,000 to 4,000 of live births (http://pediatricneurology.com/infantil.htm). That is a staggering difference. Anywhere to half or a quarter the total number of cases. I daresay almost everyone recognizes a child with Down Syndrome as a child with Down Syndrome. They would never say that Down Syndrome was a case of colic. Certainly no medical professional would dismiss Down Syndrome as Colic. Ask an IS parent how many times that has happened to their child. Sad.
My point is I don't think that special needs groups should splinter like this. You shouldn't have to have Down Syndrome to be allowed into Gigi's Playhouse. You should just have a need for a place like Gigi's playhouse. There should be no hierarchy.
Don't get me wrong. I'm all for advocating for children with Down Syndrome and for helping them to reach their full potential. I believe with all my heart they are wonderful children who deserve the very best we all have to offer them. My cousin Joe Joe had Down Syndrome. He was a loving man child, who remained mostly non-verbal his entire life. He could say a few words. His name. My name, which came out Gunna. Hot Dog. Ice Tea. Mom. Dad. Bubba for brother. He had a great sense of humor. Once when my father was chasing my mother with the running hose, she screamed for help from Joe Joe. He was her cousin as well. Her uncle was married to my father's sister... but let us save our convoluted family tree or ring or whatever it really turns out to be for another time. Joe Joe stood and stared at her wordlessly for a second. Then he did his best body builder pose and growled like the Incredible Hulk. My father had caught my mother and was dragging her back to the hose, but as Joe transformed into the Hulk, my father dropped my mother in a fit of laughter, and Mama escaped into the house laughing and singing her thanks for Joe's brave rescue of her. Joe Joe played with my sister and I daily as children. He is ever-present in my early memories. I spent my life defending him from bullies on the bus, and I openly hugged and kissed him in view of my friends and told them all to leave my boy alone. I loved him as if he were a brother, a friend. I only ever wanted the best for him. And he deserved so much more than he ever received.
But Down Syndrome is not exactly rare. The prevalence is 1 in 800 live births or 1 in 971 children aged 0 to 19 (http://www.medicalnewstoday.com/releases/172493.php). Infantile Spasms, of which 49% of LGS cases began as and which is how Jimmie's epilepsy began, has a prevalence of 1 in 2,000 to 4,000 of live births (http://pediatricneurology.com/infantil.htm). That is a staggering difference. Anywhere to half or a quarter the total number of cases. I daresay almost everyone recognizes a child with Down Syndrome as a child with Down Syndrome. They would never say that Down Syndrome was a case of colic. Certainly no medical professional would dismiss Down Syndrome as Colic. Ask an IS parent how many times that has happened to their child. Sad.
My point is I don't think that special needs groups should splinter like this. You shouldn't have to have Down Syndrome to be allowed into Gigi's Playhouse. You should just have a need for a place like Gigi's playhouse. There should be no hierarchy.
Subscribe to:
Posts (Atom)