EEEKKK!!!
It's coming up! Our third puzzle-a-thon! It's one of my favoritest (i know that's not a word) days of the year.
This year it will be April 27 (we like the last Saturday of April) and again from 10am to 10pm - same locale...
This year we have fun door prizes too! I'm getting so many awesome things donated from all over the country! Fun fun and when Kyle gets our flyer done, I will post it!
Thursday, April 18, 2013
Tuesday, April 2, 2013
spectrum sibs.
Tonight Eva prayed that God would give Maddy just a little excitement about the upcoming puzzle a thon and for the entire month since this is her special month. I wanted to chuckle about the fact that Eva was asking for Maddy to receive excitement, being that Maddy is usually one big ball of excitement about pretty much everything from the sun rising to her bubble gun. But the honesty and the heart and the depth of her prayer left me fighting back tears.
It's hard to explain autism. Super hard.
What is harder is to explain it to the siblings.
Why does Maddy get so much attention? Why does Maddy's rules seem to be different than ours? Why does everyone have a shirt with Maddy's name on it? (The later coming from the twinsie, Maelle, miss fashion diva...that while she will wear her sister's shirt, there is always a begrudging moment when she puts it on and knows it doesn't have her name on it. And yes, Dr. MAL's suggestion of getting some Maelle tshirts has been heeded and we plan on creating a special Spectrum Sib day just for her and Eva)
It's gotta be a rough gig. Really. Here is this sibling that you love and yet can be overly emotionally charged, crabby, overstimulated, bubbly, distant, lacking personal boundaries, controlling, giving, and - in Maddy's case - FULL of nonstop chatter - always talking over you. They get special classes. They have special "toys". Everyone asks about them. And...to top it all off, you are semi "in charge" of them whenever the parents aren't around. But not in a way that makes you feel powerful...in a way that gets you in trouble if you miss something that they did and your parents ask you about it later.
Tough gig.
And I know it.
And don't worry...many many many many many many many people feel the need to remind me of it too.
"don't forget about your other kids too"
as if I would somehow forget they existed and that they have needs and that they want their sister to be "normal" just as much - if not more - than I do.
So then, as if I haven't spent enough time worrying over my parenting decisions for Maddy and her spectrum remission and regression and remission and why is she still chewing on that stupid pencil and biting her sweatshirt zipper....as if I haven't spent enough time worrying over my skills at spending equal time with each child and my husband. As if I haven't tried to at least remember to brush my teeth in the morning, I have to worry about how people perceive my parenting skills for the spectrum sibs.
"Oh you sure talk alot more about Maddy than Eva or Maelle."
"I doubt that, maybe you weren't paying attention to that conversation."
"why are Eva and Maddy in piano but not Maelle?"
"Because she's 4."
"So is Maddy."
"Yes, but Maelle doesn't have any issues with her finger strength or dexterity. Piano is a fun way to encourage Maddy to use her fingers independently and give them strength."
"But what about Maelle?"
To which I want to scream: NEWSFLASH but it will never be fair. Ever. Never ever ever. No matter what I do or how I try. I can never make it even. All I can do is my best and hope that is good enough.
I have spent the last 3 years agonizing over this....probably more like 4 years when we really get down to it. And thankfully tonight, listening to Eva pray for her sister to feel loved in "her special month" helped me breathe a little.
Eva may not understand even a sliver of what Maddy's autistic remission is and why she gets more attention or why sometimes Maddy is the way she is....but it doesn't matter to her. Maddy is her sister and she is proud of it.
Sometimes the most freeing words are said by six year olds.
Many times I find Eva and Maelle off whispering with each other while Maddy is absorbed in book land and while this used to bother me...that they were excluding Maddy in some way...truth be told, Maddy probably wandered off and decided she was done with imagination and wanted some time to just be with her books. Now I smile to know that even though our journey is different, and we're not in the midst of therapies and ABA and chaos...I know that they have each other. Eva and Maelle will have a bond that Maddy will never truly understand. Just like Maddy has a bond with many of her spectrum buddies that they will never understand.
Sure, it's not always roses and there are many times when I hear "but it's not fair" in our house. I'm finding that slowly we are all melding into our family norm. Each of us connected by a unique bond to each other. Sealed by our Heavenly Father. Thank you, God that even in the hard times, you bring the smiles and the laughter and the Hope of the future.
It's hard to explain autism. Super hard.
What is harder is to explain it to the siblings.
Why does Maddy get so much attention? Why does Maddy's rules seem to be different than ours? Why does everyone have a shirt with Maddy's name on it? (The later coming from the twinsie, Maelle, miss fashion diva...that while she will wear her sister's shirt, there is always a begrudging moment when she puts it on and knows it doesn't have her name on it. And yes, Dr. MAL's suggestion of getting some Maelle tshirts has been heeded and we plan on creating a special Spectrum Sib day just for her and Eva)
It's gotta be a rough gig. Really. Here is this sibling that you love and yet can be overly emotionally charged, crabby, overstimulated, bubbly, distant, lacking personal boundaries, controlling, giving, and - in Maddy's case - FULL of nonstop chatter - always talking over you. They get special classes. They have special "toys". Everyone asks about them. And...to top it all off, you are semi "in charge" of them whenever the parents aren't around. But not in a way that makes you feel powerful...in a way that gets you in trouble if you miss something that they did and your parents ask you about it later.
Tough gig.
And I know it.
And don't worry...many many many many many many many people feel the need to remind me of it too.
"don't forget about your other kids too"
as if I would somehow forget they existed and that they have needs and that they want their sister to be "normal" just as much - if not more - than I do.
So then, as if I haven't spent enough time worrying over my parenting decisions for Maddy and her spectrum remission and regression and remission and why is she still chewing on that stupid pencil and biting her sweatshirt zipper....as if I haven't spent enough time worrying over my skills at spending equal time with each child and my husband. As if I haven't tried to at least remember to brush my teeth in the morning, I have to worry about how people perceive my parenting skills for the spectrum sibs.
"Oh you sure talk alot more about Maddy than Eva or Maelle."
"I doubt that, maybe you weren't paying attention to that conversation."
"why are Eva and Maddy in piano but not Maelle?"
"Because she's 4."
"So is Maddy."
"Yes, but Maelle doesn't have any issues with her finger strength or dexterity. Piano is a fun way to encourage Maddy to use her fingers independently and give them strength."
"But what about Maelle?"
To which I want to scream: NEWSFLASH but it will never be fair. Ever. Never ever ever. No matter what I do or how I try. I can never make it even. All I can do is my best and hope that is good enough.
I have spent the last 3 years agonizing over this....probably more like 4 years when we really get down to it. And thankfully tonight, listening to Eva pray for her sister to feel loved in "her special month" helped me breathe a little.
Eva may not understand even a sliver of what Maddy's autistic remission is and why she gets more attention or why sometimes Maddy is the way she is....but it doesn't matter to her. Maddy is her sister and she is proud of it.
Sometimes the most freeing words are said by six year olds.
Many times I find Eva and Maelle off whispering with each other while Maddy is absorbed in book land and while this used to bother me...that they were excluding Maddy in some way...truth be told, Maddy probably wandered off and decided she was done with imagination and wanted some time to just be with her books. Now I smile to know that even though our journey is different, and we're not in the midst of therapies and ABA and chaos...I know that they have each other. Eva and Maelle will have a bond that Maddy will never truly understand. Just like Maddy has a bond with many of her spectrum buddies that they will never understand.
Sure, it's not always roses and there are many times when I hear "but it's not fair" in our house. I'm finding that slowly we are all melding into our family norm. Each of us connected by a unique bond to each other. Sealed by our Heavenly Father. Thank you, God that even in the hard times, you bring the smiles and the laughter and the Hope of the future.
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