Siblings of special needs children often suffer in silence, watching their sibling receiving a huge outpouring of attention from their parents and not completely understanding why they are not getting that kind of attention. This is a largely silent problem, but it is very real. I recently recorded a video session of my eldest son, Max, talking about Rosie and her therapy, and was taken aback by his obvious struggle: he loves his sister very much, but resents the lion's share of attention she receives from me. The session ended with Max getting very upset with me (not on the video) and going to his room for a bit, then coming back downstairs very weepy and fragile, and wanting to just sit with me. I was reminded that it is vital to carve out time for him as well, and since this video have been trying to get some alone time with him and his brother on a weekly basis away from Rosie. This blog is about showing ALL aspects of being a family with special needs, and so I have decided to include this video to remind all parents of special needs children that even if they aren't always saying it, our child's siblings need to be reminded how incredibly special and loved they are as well.
Saturday, October 9, 2010
Meltdown City
We have very few videos of Rosie's meltdowns because we are usually fully occupied in trying to stop one than record it for posterity. However, today was a particularly trying afternoon for Rosie with several tantrums, and we finally decided that--so others might see what many special needs families deal with on a daily basis--we'd record a small clip of it to help give a fuller picture of the severity of some of the problems for families of autistic children. Keep in mind, this was about her 12th tantrum of the day, and this one we recorded was at the tail-end of a 45-minute crying jag.
Rosie Channels Clint in "The Good, the Bad, and the Really Ugly"...
This week has been a challenging one for me, with really good things happening in equal proportion to really bad things, and not a lot of processing room in between.
On the good side, Rosie has taken to Floortime like a duck to water, and is thriving with this particular form of therapy in a way that takes my breath away on a daily basis. Today, for instance, I was able to attend Max's baseball game with her--admittedly, I couldn't watch much of it because I was trying to constantly redirect her from her one-woman demolition crew mindset, but I was there--more than I could have dreamed even 3 months ago. Then later today, she wanted some yogurt and, as I fed it to her, took the opportunity to drop a sloppy, open mouthed, drool-y, yogurt-y kiss on my lips between every spoonful. It was both truly disgusting and absolutely, miraculously beautiful. Last night, we took her to a noisy, chaotic school festival at Max's elementary school and instead of melting down, she walked up to a couple total strangers, got right in their face and said "hi!" Each of these are tiny miracles for us, and we directly attribute them to working our butts off doing Floortime.
Which brings me to the not-so-good...
When Floortime is starting to take hold with a child, they become--as "normal" children do--relentless in their efforts to get you to get up and play. All well and good, but with Rosie we have found that she is not redirectable the way another child might be--she is laser-focused on playing, and if you do not get up RIGHT NOW and play, a meltdown ensues. As a result, we are having 20-30 small Floortime sessions a day. Incredible for her, exhausting for me. To constantly be in the act of trying to engage and interact with someone like Rosie requires a high level of active thought, active movement, high energy and creativity. "Downtime" is no longer much of an option, since her naps or bedtime are the only times I can squeeze in time with my other children, cleaning the house, reminding my spouse what my name is, and cooking the occasional meal. I am realizing this level of intensive therapy is IMPOSSIBLE without a team effort of core people to help--which I currently do not have and desperately need.
On top of this, Rosie is not sleeping. Sleeping difficulties are very common for girls with Turner Syndrome as well as for children with sensory-related issues and autism, and Rosie is definitely the poster child for insomniacs. She has periods of sleeping relatively well, but the slightest change in environment or health or...anything! will lead to weeks of interrupted sleep patterns. Currently, she has been waking up between every 3-5 hours at night in a hyperactive state, wanting to stim and play and run around in circles. I am in the process of speaking with my pediatrician to see if Rosie might benefit from melatonin, which research suggests might be at lower levels in TS girls. Some girls respond beautifully to the treatment, others not so much. Fingers crossed that Rosie is one of the responsive ones, because I don't know how many more 2AM Floortime sessions I can do!
On the good side, Rosie has taken to Floortime like a duck to water, and is thriving with this particular form of therapy in a way that takes my breath away on a daily basis. Today, for instance, I was able to attend Max's baseball game with her--admittedly, I couldn't watch much of it because I was trying to constantly redirect her from her one-woman demolition crew mindset, but I was there--more than I could have dreamed even 3 months ago. Then later today, she wanted some yogurt and, as I fed it to her, took the opportunity to drop a sloppy, open mouthed, drool-y, yogurt-y kiss on my lips between every spoonful. It was both truly disgusting and absolutely, miraculously beautiful. Last night, we took her to a noisy, chaotic school festival at Max's elementary school and instead of melting down, she walked up to a couple total strangers, got right in their face and said "hi!" Each of these are tiny miracles for us, and we directly attribute them to working our butts off doing Floortime.
Which brings me to the not-so-good...
When Floortime is starting to take hold with a child, they become--as "normal" children do--relentless in their efforts to get you to get up and play. All well and good, but with Rosie we have found that she is not redirectable the way another child might be--she is laser-focused on playing, and if you do not get up RIGHT NOW and play, a meltdown ensues. As a result, we are having 20-30 small Floortime sessions a day. Incredible for her, exhausting for me. To constantly be in the act of trying to engage and interact with someone like Rosie requires a high level of active thought, active movement, high energy and creativity. "Downtime" is no longer much of an option, since her naps or bedtime are the only times I can squeeze in time with my other children, cleaning the house, reminding my spouse what my name is, and cooking the occasional meal. I am realizing this level of intensive therapy is IMPOSSIBLE without a team effort of core people to help--which I currently do not have and desperately need.
On top of this, Rosie is not sleeping. Sleeping difficulties are very common for girls with Turner Syndrome as well as for children with sensory-related issues and autism, and Rosie is definitely the poster child for insomniacs. She has periods of sleeping relatively well, but the slightest change in environment or health or...anything! will lead to weeks of interrupted sleep patterns. Currently, she has been waking up between every 3-5 hours at night in a hyperactive state, wanting to stim and play and run around in circles. I am in the process of speaking with my pediatrician to see if Rosie might benefit from melatonin, which research suggests might be at lower levels in TS girls. Some girls respond beautifully to the treatment, others not so much. Fingers crossed that Rosie is one of the responsive ones, because I don't know how many more 2AM Floortime sessions I can do!
A Little Light Reading...
I tend to get a bit obsessed with a subject when it's close to my heart--it's the researcher in me, I suppose. Anyway, Moon and I are researching the idea of starting a special needs ministry in our church. (It's my secret strategy to return to church--start the ministry myself!!--because I think it's the only way I'm ever going to get to church again!) Seriously, though, we've discovered that 95% of families with special needs children are unchurched. And that 80% of couples with autistic children will divorce. In other words, the church--which (according to Jesus) should be at the forefront in caring and supporting "the least of these"--isn't doing the job it should reaching these desperately needy, desperately isolated and struggling families.
In our research, we've picked up the following books:
The Special Needs Ministry Handbook
Special Needs, Special Ministry
Autism and Your Church
Let All the Children Come to Me
and, since I was already on an Amazon.com ordering kick, I picked up a couple books that had been recommended for my personal reading:
Not My Boy! by Rodney Peete
Dancing with Max: A Mother and Son Who Broke Free by Emily Colson
The last book was one I sat down with last week and read in one sitting. Emily Colson, the daughter of Chuck Colson, has a severely autistic son, Max, who she has raised pretty much singlehandedly for most of his 19 years. Her descriptions of struggling with the school system to get him an adequate education were infuriating at best, terrifying at their worst (at one point she seriously considers fleeing the state with him in order to avoid his forced, state-placed attendance at a nearby military-style boarding school for autistic children). Her son was diagnosed in the early 1990s, when the advances in therapy for autism were at their earliest stages. Much of the recommendations made to her by "experts" were ridiculous (lock him in a closet when having a meltdown??!! Seriously!)
As a result, I found it most telling and very interesting when she writes:
I have discovered, too, that laughter and learning are inextricably linked for Rosie. I feel quite often like I'm channeling Buster Keaton and Charlie Chaplin in our play together--the higher the slapstick, the better the pratfall, the more she and I are connected, having a conversation through laughter. Hopefully tomorrow I will be able to upload some video of Rosie doing a couple of her favorite plays--mommy pretending to be Elvis Presley reincarnated as a group of farm animals who have lost their legs, and tickling her funny bone by making this creepy, growly noise in my throat that she finds hilarious.
In our research, we've picked up the following books:
The Special Needs Ministry Handbook
Special Needs, Special Ministry
Autism and Your Church
Let All the Children Come to Me
and, since I was already on an Amazon.com ordering kick, I picked up a couple books that had been recommended for my personal reading:
Not My Boy! by Rodney Peete
Dancing with Max: A Mother and Son Who Broke Free by Emily Colson
The last book was one I sat down with last week and read in one sitting. Emily Colson, the daughter of Chuck Colson, has a severely autistic son, Max, who she has raised pretty much singlehandedly for most of his 19 years. Her descriptions of struggling with the school system to get him an adequate education were infuriating at best, terrifying at their worst (at one point she seriously considers fleeing the state with him in order to avoid his forced, state-placed attendance at a nearby military-style boarding school for autistic children). Her son was diagnosed in the early 1990s, when the advances in therapy for autism were at their earliest stages. Much of the recommendations made to her by "experts" were ridiculous (lock him in a closet when having a meltdown??!! Seriously!)
As a result, I found it most telling and very interesting when she writes:
...I did anything to make Max laugh. I ran around the house and made the sound of someone falling in a manhole, pretended to trip and fall on the floor, piled up the living room pillows and dived into them like a swimming pool. Max would pretend to fill me up with air just to watch me shoot around the room like a deflating balloon. And I made up crazy songs to help him move through his day. Initially, I worried that the neighbors were watching, but I quickly realized there were trying their best NOT to look. I was, after all, working for a captive audience, a focused, connected, interactive audience of one. It was as if laughter and humor bore their way right through the wall of autism. If he was laughing, he was learning. [emphasis mine]As I read this, I exclaimed out loud, "she was doing Floortime with him and didn't know it!" And, as it turned out, this was her most effective therapy with Max.
I have discovered, too, that laughter and learning are inextricably linked for Rosie. I feel quite often like I'm channeling Buster Keaton and Charlie Chaplin in our play together--the higher the slapstick, the better the pratfall, the more she and I are connected, having a conversation through laughter. Hopefully tomorrow I will be able to upload some video of Rosie doing a couple of her favorite plays--mommy pretending to be Elvis Presley reincarnated as a group of farm animals who have lost their legs, and tickling her funny bone by making this creepy, growly noise in my throat that she finds hilarious.
Subscribe to:
Posts (Atom)