I told all of you that we were having an IEP (Individual Education Plan)meeting this week to discuss both of the twins' development in school. To see if either of them needed to have an IEP in the works or not.
The conclusion, and while I don't talk about Maddy's twin, Maelle, on here too often, was that Maelle definitely needs further testing with the speech coordinator here. She has full cognition, she's just extremely shy and reserved and has pronunciation difficulties. We hoped having her adenoids and tonsils removed last May (though there were more pressing issues of her not sleeping and waking up gasping for air that brought about this surgery; we hoped it might help in her speech too) but that was not the case. She is doing better every day and she does go to speech weekly but now that they are in school...it's the school's job to help us out on this.
That was no surprise to me. I am Maelle's translator and even on my best days, I don't know sometimes what she is saying.
So we moved on to Maddy.
And I know that both Justin and I were feeling pretty nervous about it. Maddy is a firecracker. She's cute. Adorable. But she is always pressing the limit of what she can or should get away with.
Maddy does not qualify for services. None.
The only concern they had regarding Maddy was that she doesn't sit still. Ever. During circle time, they have given her 4 squares that she can move around on but she must stay within her boundaries. And she does. She is paying full attention, she just cannot sit still long enough. And this is a good start, they gave her limitations and she stuck with them so it's only a matter of time and effort to keep changing those limitations until she can sit still...ABA at its finest.
But really, the main concern is that a 3 year old can't sit still? Academically, we think she is bored. She scribbles all over her papers but she knows what she was supposed to be doing...just filling time. Typical Maddy...the girl who flew through ABA so quickly that 10 trials bored her to death and we had to do 5 just to keep up with her brain. This isn't too concerning either. She's 3.
So we left there thinking...wow. In a few short months, she will be done with speech at the Rehab Center and then....
nothing.
Then she just goes to school like every other kid.
really?!
I know some of you must be thinking...why is this so shocking? The child got an ASD recovery diagnosis this summer. Shouldn't this be expected?
The answer is no.
We could hope that we would get here but there are/were no guarantees. And after over 1.5 years (which is a mere blip in the timeline of most families dealing with autism) of constant appointments and therapies and therapists and meetings and programs...to see the end in sight....
surreal.
We will still have assessments, I'm sure. OT in May and Dr. MAL in June and we'll see when we talk with Jen at Rehab what her thoughts are...but nothing full time. Nothing all encompassing.
....wow...
Tonight, Maddy was extra cuddly with me. She showered me with hugs and kisses and "i love you mommy's" almost like she knew what had happened today. And I hugged, kissed and "I love you"'d back, soaking in every millisecond of it.
Recovery from Autism is so possible.
Thursday, December 15, 2011
Wednesday, December 7, 2011
miraculous.
No news is good news, right?
The blog has been pretty quiet which is really reflective of how things have been in the MV world.
Pretty Quiet.
Maddy is doing extraordinary. (as usual) She is growing, changing, learning, developing. Just like every other kid.
She had an OT reassessment in...was it November? I can't remember, either way, it went wonderfully. She is still struggling with pencil placement but overall, she continued to grow and surpassed many of her peers in her OT skills. She graduated from 3 month evals to 6 month evals and we won't be returning to Stephanie until May! Maddy still doesn't enjoy any kind of prehandwriting skills or even coloring, but she is getting better at it. She has begun to choose to color on her own in her play time and that is great to see. She needs to have the interest before she can really do it with any kind of passion.
Speech is going well - she is getting better at understanding concepts and categories. She doesn't seem to really have a speaking speech problem but more understanding things in a less "literal" form. She is doing well with this though. She now understands when we say "wash off your face" that we're not literally going to wipe her face clean. Or today when I asked if her nose was running again and she said yes, she knew I meant a snotty nose and not that her nose left her face and was running away. Oh the phrases we say!
Next week we will have another school meeting to see if the Special Education provider thinks if either twin will qualify for services. It's been a long process getting the girls' records from the Rehab Center to the school. (I think this was the point of the girls' 2:7 and 2:9 meetings last year so we could avoid all this time gap...but obviously that didn't work. Sorry, guys, I know you read this....not downplaying your roles, which were very important, but somehow there still seems to be a time lapse between meeting criteria for an IEP from 2:9 to 3:6)...I don't know. I will find out more next week. It's frustrating, I'll be honest. And I'm not frustrated with anyone in particular. I'm totally not. I love everyone that we are currently dealing with or have dealt with. It's just such a blind process and all attempts to make it less confusing only seem to add to it. And how do we fix that? I don't know.
In October, I had the opportunity to travel to our Capitol and speak before the Human Resources Committee about the current Autism bill. I also had the privilege to meet with the CEO of the Anne Carlsen Center. That was a great experience. Speaking before lawmakers is a humbling experience. I can also say that I'm really encouraged with what Anne Carlsen is doing now and what their future hopes are. I can only hope that Maddy's story and Maddy's Voice can continue to make a difference in the Autism Community in our state and, if I'm not too prideful, our country.
And now Christmas is upon us. What does Maddy want for Christmas? A firetruck. And if you ask her if she wants anything else, she will tell you she wants a fireman, a fire, and water to put the fire out. oh Maddy girl.
She is truly an amazing child. And any Christmas wish I had, has been fulfilled. Just watching all my children sharing the joy and the love of this season. To see them excited. To have all of them decorating the tree. To hear Maddy singing "Jingle Bells" at the top of her lungs. To hear Eva tell her sisters to be good so Santa will give them presents. To have them all shout for joy when I finally found the missing Mary from our nativity scene. The exclamations of the pretty Christmas lights. To hold my husband's hand and feel the strength of our marriage. To know we survived an unthinkable and were blessed with a miracle.
Merry Christmas everyone. Merry Christmas.
The blog has been pretty quiet which is really reflective of how things have been in the MV world.
Pretty Quiet.
Maddy is doing extraordinary. (as usual) She is growing, changing, learning, developing. Just like every other kid.
She had an OT reassessment in...was it November? I can't remember, either way, it went wonderfully. She is still struggling with pencil placement but overall, she continued to grow and surpassed many of her peers in her OT skills. She graduated from 3 month evals to 6 month evals and we won't be returning to Stephanie until May! Maddy still doesn't enjoy any kind of prehandwriting skills or even coloring, but she is getting better at it. She has begun to choose to color on her own in her play time and that is great to see. She needs to have the interest before she can really do it with any kind of passion.
Speech is going well - she is getting better at understanding concepts and categories. She doesn't seem to really have a speaking speech problem but more understanding things in a less "literal" form. She is doing well with this though. She now understands when we say "wash off your face" that we're not literally going to wipe her face clean. Or today when I asked if her nose was running again and she said yes, she knew I meant a snotty nose and not that her nose left her face and was running away. Oh the phrases we say!
Next week we will have another school meeting to see if the Special Education provider thinks if either twin will qualify for services. It's been a long process getting the girls' records from the Rehab Center to the school. (I think this was the point of the girls' 2:7 and 2:9 meetings last year so we could avoid all this time gap...but obviously that didn't work. Sorry, guys, I know you read this....not downplaying your roles, which were very important, but somehow there still seems to be a time lapse between meeting criteria for an IEP from 2:9 to 3:6)...I don't know. I will find out more next week. It's frustrating, I'll be honest. And I'm not frustrated with anyone in particular. I'm totally not. I love everyone that we are currently dealing with or have dealt with. It's just such a blind process and all attempts to make it less confusing only seem to add to it. And how do we fix that? I don't know.
In October, I had the opportunity to travel to our Capitol and speak before the Human Resources Committee about the current Autism bill. I also had the privilege to meet with the CEO of the Anne Carlsen Center. That was a great experience. Speaking before lawmakers is a humbling experience. I can also say that I'm really encouraged with what Anne Carlsen is doing now and what their future hopes are. I can only hope that Maddy's story and Maddy's Voice can continue to make a difference in the Autism Community in our state and, if I'm not too prideful, our country.
And now Christmas is upon us. What does Maddy want for Christmas? A firetruck. And if you ask her if she wants anything else, she will tell you she wants a fireman, a fire, and water to put the fire out. oh Maddy girl.
She is truly an amazing child. And any Christmas wish I had, has been fulfilled. Just watching all my children sharing the joy and the love of this season. To see them excited. To have all of them decorating the tree. To hear Maddy singing "Jingle Bells" at the top of her lungs. To hear Eva tell her sisters to be good so Santa will give them presents. To have them all shout for joy when I finally found the missing Mary from our nativity scene. The exclamations of the pretty Christmas lights. To hold my husband's hand and feel the strength of our marriage. To know we survived an unthinkable and were blessed with a miracle.
Merry Christmas everyone. Merry Christmas.
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