We had a meeting with Dr. MAL on Monday. It was one of those appointments where I couldn't wait and yet dreaded it at the same time. She wanted us in the office and requested to see Maddy. Gulp. She hadn't seen Maddy since the ABA training in September and she hadn't had Maddy in the office since the beginning of July. I know that sounds weird for anyone not directly involved but this is quite typical. Most appointments, while they were entirely about Maddy, did not involve her. And frankly, you can get alot more accomplished in a meeting when there are no children present, autistic or not.
She was planning on "testing" Maddy in many of the areas of ABA that she has mastered here for us. And while, I KNOW that she knows her stuff, it's nerve wracking. It's alot for a 2 year old.
Dr. MAL had moved her practice to join a group of psychologists in another building (we'll call it The Institute) and so everything about Monday was filled with anxiety. I had to arrive 30 minutes early to fill out the necessary paperwork, so Justin dropped me off in the middle of Maddy's OT therapy and went back to get her. I sat anxiously in that office for 30 minutes. By myself. The so-called paperwork that I was supposed to fill out had already been filled out when she first moved and anything else that I needed to fill out, the secretary (that's an entirely different story) wanted to wait until Dr. MAL was there to see what she needed. Great. So instead of at least having my husband to wait nervously with, I was alone. Staring at the decor. (Just think scary psychology offices from the 80s and you will picture where I was sitting)
It was like I could feel the clock tick every second away.
Finally I heard the rambunctious squeals from Maddy in the hallway and then walked in Justin and Maddy. A very nice distraction. Then Lori came from EI. Whew. My reinforcements have arrived. The secretary then handed me a 5 page document to read and sign................
Sigh.
Dr. MAL's office was nice. Nothing like the lobby. Very warm and comforting. There was a little playhouse on the floor for Maddy to play with and another big wooden activity block. She happily sat down on the floor and picked up the dolls and began playing appropriately with them. I followed Dr. MAL's eyes as she watched Maddy and I could see that she could see what we are seeing in Maddy. Relief.
I think I could write books about how that meeting went but the basic synopsis is that Maddy's progression is not typical. Not. At. All. She is progressing so fast that we are all astonished. Dr. MAL didn't even bother "testing" her because of how well she was interacting and playing in the office during our meeting. At one point we were talking about introducing foreign languages.
Stop.
There is no way in July that I could have imagined that we would be discussing foreign languages in November. No way. Maddy has only been doing ABA for 2 months. In 2 months' time, she has gained amazing eye contact, answers to her name, can follow basic instructions, can imitate, knows her body parts, can identify (with pointing and speaking) 9 different colors, understands verbs like running, kicking, crying; requests things, plays with her sisters, can identify basic nouns like cat, dog, car; gives hugs, holds hands, gives kisses, and is starting to ask questions like "how are you?" "Okay, Mama?" "where is green?"
At the end of the meeting I asked Dr. MAL if she would reassess Maddy. She said she will in March.
In many ways, I know that she will not meet the criteria for autism in March. Will she still have a diagnosis of PDD or such? Yes, most likely...but not autism. Not that anything will change yet. We have alot of work to do and we will keep doing it, regardless of criteria or not. But it's outstanding.
Phenomenal.
We've been sharing the news intermittently with people and while everyone is super excited and thrilled for us, there is a subtle, underlying question that a few people have asked.
So...was she misdiagnosed?
NO! I know many people that ask this question do not mean anything by it. They just want to make sense of things. I can understand that. Heck, I think I probably would think that too if I wasn't directly involved.
But no. She was not misdiagnosed. And in assuming that, that belittles every single thing that we are doing. In ABA, in speech, in OT, at home, and in prayer. No. Maddy has Autism. When I started all of this in April, I knew in my heart every single red flag. I could read books on other children with Autism and it felt like they were writing about my child. Dr. MAL is highly qualified to make the diagnosis. She studied under many of the pioneers in Ohio that are still working very hard to continue what Lovaas did.
God is working. In all of us and in Maddy. I firmly believe that. Saying that her diagnosis was human error, belittles Him too.
But this is psychology. There is no medical test to confirm autism. No extra or lagging chromosome. No blood test. No definite. There is always room for interpretation and it will probably always be there.
Is she recovered?
No. Not yet. Who knows if and when. She is still very much behind her peers on several aspects. She is gaining. Her exponential growth speaks volumes but unfortunately, that is what is required to catch up with a group that is also growing volumes every day.
We have alot of work yet to do.
So what are you saying?
I'm saying this: ABA is working. Speech is working. OT is working. Prayers are being answered.
That is what I am saying.
It's working.
Wednesday, November 24, 2010
Tuesday, November 9, 2010
keep on.
"A gap in time but not a gap in progress"
Maddy was a pirate for Halloween. Ah, Halloween. One of those holidays that every kid cannot wait for. Eva was a snow princess and everyday of October asked me if it was Halloween...yet?! Maelle was an Eskimo and while she had minimal concept of what actually was happening, she tagged along to whatever her big sis was doing.
And when it came to dressing up Maddy, I was lost. A bit hesitant. I didn't know what exactly she would tolerate. I had a half a dozen costumes from dress up clothes, prior Halloweens, friends, and even bought a new one in hopes that one of these would do. I did not bring out the pirate costume as Eva had been a pirate the last 2 holidays and I was tired of seeing it. She probably would have been it again if I hadn't told her "NO!" back in July when most kids (at least mine) start thinking about the candy holiday.
I had a black cat, a candy corn witch, various princess dresses, lion, cowgirl, chicken...and while I grabbed a turtleneck to put under Maelle's costume, Maddy snatched up the pirate hat from the dress up box, put it on her head and came up to me saying "RRRRRR....mateys!"
So I caved.
And she was the best pirate ever.
She didn't really understand the concept of trick or treating. After 4 houses she was done with all of it. She kept looking at us like why can't I go in the house? Why do I have to keep getting in the car? What is the point of all of this? Making me think we should have practiced this before doing but oh well. Thankfully at 4 and 2...trick or treating at 4 houses is enough for them. Next year will be different.
On Tuesday we had a phone conference with the OT and SLP therapy team that we see twice a week "in the city". It went well. It is quite obvious for everyone involved that Maddy is growing quickly. A blessing we can't even fully describe. They aged her developmentally between 2 and 2.5. She will be 2.5 on December 2. And she had spikes well above 2.5. We were/are in a bit of shock. Somehow our daughter has grown 9 developmental months in 4 actual month's time.
We can see it. But we also see how much we have yet to do. Yet we are thankful for every improvement. Every step and developmental milestone. Holding hands. Requesting things. Making eye contact. Understanding and preforming simple commands. Hugging. Singing songs. Forming sentences. Drinking from a glass. Using her fork. All of these "normal" things are so incredible to us.
When I think back to when Eva was 2 and how I, then, happily bragged at how advanced she was for her age, it makes me want to vomit. Really it does. Not that I shouldn't share my child's accomplishments but rather, that I thought they were some kind of reflection of me and my parenting. I didn't see the blessing of it all. Sure, my parenting style has evolved since adding the twins to the mix but I didn't raise Eva and Maddy much differently. No, I couldn't devote hours to sitting on the floor learning baby signs with Eva to Maddy or Maelle...but I didn't neglect them either. That's just the nature of the child. Some learn quickly, others are average, some are slow, and some struggle. But autism isn't learned. It's not a matter of spending more time with the oldest and less with the youngest. Yes, I did devote alot of time to teaching Eva and she is very independent but that is her...and her accomplishments, while they are great, are not because I'm a superior parent. Just like Maddy's accomplishments are a result of hard work and prayer, but not because we are somehow superior at any of this. In fact, I very often feel quite lost and inadequate when it comes to the task at hand: "operation: recover my daughter from Autism".
We had a stomach flu go through the house a few weeks ago and now we're dealing with a croup like cough with severe ear infections and sore throat. It makes me frustrated because we losing time in the therapy room and also because I'm tired of seeing my babies sick. There have been some slight regressions...she definitely rocks and groans more when she is sick. We had almost thought that behavior was gone (minus bedtime where it is still quite prevalent) but it came back like an old nemesis the minute she got sick. Sigh. She started turning the wheels on the train toy more than pushing the train around.
And yet. Today while she was playing with the Dora schoolhouse, the door was missing. So came to me and said "door on please." At first I didn't understand what she was wanting - her articulation isn't the best (she is still 2) but when I finally did, amazement. I acted like it was normal and began rummaging through the toys trying to find the door. Maddy then started saying "where door?" to which, I would say "yes, I don't know where the door is. let's find it!"
I think I looked through every toy box I could find. It was probably some 20 - 30 minutes later before I finally did find that door. She had moved on to playing with something else. I walked into the room and called her name while holding up the door to see her reaction. (remembering how awesome it is that I can call her name from across the room and she will recognize that it's her I'm calling and respond). She turned to look at me and when her eyes glanced to what I was holding...instant recognition! She smiled and said "yea! Door!" She ran over to the schoolhouse and said "please" while she waited for me to put it back on.
That dumb door fell off another 900 times in the 5 minutes she played with that toy but each time she would bring it to me and wait for me to put it back on the house. Normally such a task would become quite annoying but in the context of how amazing all of it was, it was fine. I will keep putting that door on if she keeps asking me to.
As long as she keeps asking.
Maddy was a pirate for Halloween. Ah, Halloween. One of those holidays that every kid cannot wait for. Eva was a snow princess and everyday of October asked me if it was Halloween...yet?! Maelle was an Eskimo and while she had minimal concept of what actually was happening, she tagged along to whatever her big sis was doing.
And when it came to dressing up Maddy, I was lost. A bit hesitant. I didn't know what exactly she would tolerate. I had a half a dozen costumes from dress up clothes, prior Halloweens, friends, and even bought a new one in hopes that one of these would do. I did not bring out the pirate costume as Eva had been a pirate the last 2 holidays and I was tired of seeing it. She probably would have been it again if I hadn't told her "NO!" back in July when most kids (at least mine) start thinking about the candy holiday.
I had a black cat, a candy corn witch, various princess dresses, lion, cowgirl, chicken...and while I grabbed a turtleneck to put under Maelle's costume, Maddy snatched up the pirate hat from the dress up box, put it on her head and came up to me saying "RRRRRR....mateys!"
So I caved.
And she was the best pirate ever.
She didn't really understand the concept of trick or treating. After 4 houses she was done with all of it. She kept looking at us like why can't I go in the house? Why do I have to keep getting in the car? What is the point of all of this? Making me think we should have practiced this before doing but oh well. Thankfully at 4 and 2...trick or treating at 4 houses is enough for them. Next year will be different.
On Tuesday we had a phone conference with the OT and SLP therapy team that we see twice a week "in the city". It went well. It is quite obvious for everyone involved that Maddy is growing quickly. A blessing we can't even fully describe. They aged her developmentally between 2 and 2.5. She will be 2.5 on December 2. And she had spikes well above 2.5. We were/are in a bit of shock. Somehow our daughter has grown 9 developmental months in 4 actual month's time.
We can see it. But we also see how much we have yet to do. Yet we are thankful for every improvement. Every step and developmental milestone. Holding hands. Requesting things. Making eye contact. Understanding and preforming simple commands. Hugging. Singing songs. Forming sentences. Drinking from a glass. Using her fork. All of these "normal" things are so incredible to us.
When I think back to when Eva was 2 and how I, then, happily bragged at how advanced she was for her age, it makes me want to vomit. Really it does. Not that I shouldn't share my child's accomplishments but rather, that I thought they were some kind of reflection of me and my parenting. I didn't see the blessing of it all. Sure, my parenting style has evolved since adding the twins to the mix but I didn't raise Eva and Maddy much differently. No, I couldn't devote hours to sitting on the floor learning baby signs with Eva to Maddy or Maelle...but I didn't neglect them either. That's just the nature of the child. Some learn quickly, others are average, some are slow, and some struggle. But autism isn't learned. It's not a matter of spending more time with the oldest and less with the youngest. Yes, I did devote alot of time to teaching Eva and she is very independent but that is her...and her accomplishments, while they are great, are not because I'm a superior parent. Just like Maddy's accomplishments are a result of hard work and prayer, but not because we are somehow superior at any of this. In fact, I very often feel quite lost and inadequate when it comes to the task at hand: "operation: recover my daughter from Autism".
We had a stomach flu go through the house a few weeks ago and now we're dealing with a croup like cough with severe ear infections and sore throat. It makes me frustrated because we losing time in the therapy room and also because I'm tired of seeing my babies sick. There have been some slight regressions...she definitely rocks and groans more when she is sick. We had almost thought that behavior was gone (minus bedtime where it is still quite prevalent) but it came back like an old nemesis the minute she got sick. Sigh. She started turning the wheels on the train toy more than pushing the train around.
And yet. Today while she was playing with the Dora schoolhouse, the door was missing. So came to me and said "door on please." At first I didn't understand what she was wanting - her articulation isn't the best (she is still 2) but when I finally did, amazement. I acted like it was normal and began rummaging through the toys trying to find the door. Maddy then started saying "where door?" to which, I would say "yes, I don't know where the door is. let's find it!"
I think I looked through every toy box I could find. It was probably some 20 - 30 minutes later before I finally did find that door. She had moved on to playing with something else. I walked into the room and called her name while holding up the door to see her reaction. (remembering how awesome it is that I can call her name from across the room and she will recognize that it's her I'm calling and respond). She turned to look at me and when her eyes glanced to what I was holding...instant recognition! She smiled and said "yea! Door!" She ran over to the schoolhouse and said "please" while she waited for me to put it back on.
That dumb door fell off another 900 times in the 5 minutes she played with that toy but each time she would bring it to me and wait for me to put it back on the house. Normally such a task would become quite annoying but in the context of how amazing all of it was, it was fine. I will keep putting that door on if she keeps asking me to.
As long as she keeps asking.
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