Saturday, April 11, 2009
Tuesday, April 7, 2009
Natural History Museum with Friends
The girls and I picked up a neighbor and a couple of girls and headed to Deleware's Natural History Museum. We had a very nice time and all of the girls got along nicely. It was Savannah's chance to see the dinosaur bones she has been longing to see. Savannah was there to tell us what dinosaurs were carnivorous and which ones were herbivores. She knows more than I do. Unfortunately my flash didn't fire for the dino pictures because they were pretty cute.
Lila Grace kept up with all of the big girls and participated in all of the hands on crafts. She couldn't get the lids back on the markers so she very politely handed them to the man behind the table saying, "Help please." I was surprised she engaged with him so quickly but I guess when Lila needs help she will ask the first person available.
Adeline was a different story. I have known that she would not be able to handle an aquarium as the darkness and concept of glass wouldn't sit well with her sensory issues. I was surprised when the same rang true with this museum. At first she was fine but when we approached a fish tank she was very nervous and climbing up my leg. Adeline was pointing out the fish but she had to be in my arms. The animals behind the glass exhibits seemed real to her. The birds made her very nervous as does the real one at Savannah's preschool. Adeline hit her breaking point when we went into a mechanical bug display. The bugs were 95 times their actual size and roughly moving their legs and mouths. Adeline was in the stroller when one caught her eye. She started flailing in terror. She clung to me and buried her head on my shoulder. Of course Lila Grace was standing by the same bug and laughing at it. They couldn't be more opposite.
I was saddened when made aware that Adeline's sensory issues are going to follow her into museums and later into school field trips. She was uneasy most of the time and likely didn't enjoy herself. It is hard to see her twin loving every minutes of the trip, taking part in ALL the activities and labeling many of the creatures. I guess this is Adeline's road and am thankful that Lila Grace is mostly independent during trips like this so that I can give Adeline all of the support she needs.
Lila Grace kept up with all of the big girls and participated in all of the hands on crafts. She couldn't get the lids back on the markers so she very politely handed them to the man behind the table saying, "Help please." I was surprised she engaged with him so quickly but I guess when Lila needs help she will ask the first person available.
Adeline was a different story. I have known that she would not be able to handle an aquarium as the darkness and concept of glass wouldn't sit well with her sensory issues. I was surprised when the same rang true with this museum. At first she was fine but when we approached a fish tank she was very nervous and climbing up my leg. Adeline was pointing out the fish but she had to be in my arms. The animals behind the glass exhibits seemed real to her. The birds made her very nervous as does the real one at Savannah's preschool. Adeline hit her breaking point when we went into a mechanical bug display. The bugs were 95 times their actual size and roughly moving their legs and mouths. Adeline was in the stroller when one caught her eye. She started flailing in terror. She clung to me and buried her head on my shoulder. Of course Lila Grace was standing by the same bug and laughing at it. They couldn't be more opposite.
I was saddened when made aware that Adeline's sensory issues are going to follow her into museums and later into school field trips. She was uneasy most of the time and likely didn't enjoy herself. It is hard to see her twin loving every minutes of the trip, taking part in ALL the activities and labeling many of the creatures. I guess this is Adeline's road and am thankful that Lila Grace is mostly independent during trips like this so that I can give Adeline all of the support she needs.
Monday, April 6, 2009
Speech Evaluation
In effort to focus on the positive I will start with the best moments in my day.
Wonderful friends who took my children for over five hours while I headed to CHOP with Adeline.
A bouquet of home-grown daffodils from one of those friends and a homemade dinner from the other.
A fruit plate and my book waiting for me. Savannah can tell when Mommy has had "a day."
Listening to Savannah begin to soar with her piano.
I must now move on to the negative aspects of a very long day.
I decided to take Adeline to CHOP for a speech evaluation. The speech pathologist came highly recommended and Adeline is obviously behind in the speech department. We canceled our first appointment because Adeline was sick and decided not to cancel today because the next available appointment is in September. Adeline is congested and out of sorts. She had OT today and was very distracted and off of her game. I knew the appointment was going to go poorly but never did I dream that it would go as poorly as it did.
After farming my kids out to good friends, Adeline and I headed into Philly, through crazy construction and ended up being an appointment that wasn't on the books. After everything was rectified and an hour of waiting had passed we were in a little room that was set up for testing. Adeline was well into her usual naptime, not eating and clearly agitated.
We started off by explaining Adeline's history, her road in the NICU and services she is currently getting. The therapist kept asking questions about her tone and motor deficits which made her "greatly concerned for her speech development." Soon we were testing language which entailed pointing to pictures and following commands. Adeline couldn't sit still, something that plagues every evaluations that is done in a new environment. At one point she put her head back and said, "night night." She was really done with the testing before the testing was a quarter of the way through.
When Adeline was asked to point at pictures she did so but not precisely. She has a hard time being exact in her pointing and is always tapping and not resting her finger on the page. Her regular therapists and I seem decipher what she is pointing at because it isn't like she points to a shoe on a body when trying to indicate a hat. She might hit a nose when trying to point to a mouth if the face is small but she will make her way on up to the nose in a tap or two later.
Today, I got a lot of strange gazes from the therapist, some eye rolling and comments like she, "she has no idea what she is pointing at." I disagree. The therapist thought she was "playing around" when in actuality she was seeking sensory input by her constant motion. I has trying very hard to rein her in by swinging her and repositioning her in the chair. It was pretty clear the therapist didn't have the time of day to accommodate Adeline's vestibular needs or recognize that a portion of her lack of attention was due to her new environment and the distractions it provides. Adeline isn't your typical child.
Moving through the language test brought us to a point where the therapist said, "We are going to move through this quickly because she isn't going to be able to do any of it." She was wrong. Had she taken the time to use a commanding voice which would rein Adeline into the directions, Adeline certainly could have pointed to the chicken that had "no eggs." Instead the page was flipped and she asked what the child was doing in her high chair. Adeline said, "eat," and I know the preferred answer was supposed to end in and "ing." The page was flipped and I was ready to flip out!! I asked the therapist to go back and point to the other two pictures. She pointed to a child sleeping and asked Adeline, "What is this child doing?" Adeline said, "Sleeping!" Since when are therapists supposed to assume what a child can and can't do when having known them for 30 minutes.
The test moved to colors which Adeline can pick out of a group but not label. The first color that was asked was orange and Adeline doesn't know orange yet. The page was flipped and I, again, asked her to go back. I told the therapist that Adeline knows some of her colors. Well, Adeline was all over the place and said, "no color" and kept pointing randomly. I got the "See I told you so look from the therapist" coupled with, "Well today she doesn't know her colors." Give me a break.
Finally the speech part of the test started. Adeline was asked to repeat words and sounds. I jumped her after every repetition which fed her vestibular need and kept her on task. She was great considering her expressive language could use some work.
The test ended with the therapist saying, "Well maybe her speech scores won't be as bad as I thought they would be." A two minute pause of scoring followed. "I was wrong, they are pretty bad. Are you familiar with the test and where her score puts her. It is really low."
Nice delivery don't you think?? Who does this in a professional setting that is centered around kids with developmental issues.
I was treated like a looser parent when asked if I had taken Adeline to a developmental pediatrician. Clearly, the therapist thought Adeline should have a diagnosis and I was just too ignorant to take her to a doctor to get one. I responded with, "Yes, I have been to the preferred doctor from this hospital and one from Kennedy Kreiger." The therapist was surprised when I said that neither doc thought a diagnosis was eminent. I asked her what diagnosis she was fishing for and the questions was ignored with the response of, "Well they must just be classifying everything as a developmental delay."
I was furious by then end of it all. Adeline was off the wall and grunting for her bottle. When not crazy tired and frustrated she would have most likely used words but her grunt was enough for the therapist to say, "So she doesn't use language routinely?" I went on to have her define routinely as more than 50% of the time. I then explained that it simply wasn't true and that I must have been wrong to assume that terrible twos cause frustration etc. and that all two year olds ask every time when they want something and NEVER use an utterance. Please take in all the sarcasm here. I am sure it doesn't come through as well as I would like. I must note that I put Adeline in time out for her grunting/fit throwing behavior over the bottle. When out of time out she nicely said, "Open please." Not routinely speaking my you know what!!!!
My day in a nutshell.
The one thing we did walk a way with that was beneficial was a referral to a speech classroom in Bryn Mawr. It is in the same location that the girls spent the later half of the NICU stay, about 45 minutes away. It is pretty spendy and transportation nightmare but we are looking into it.
Wonderful friends who took my children for over five hours while I headed to CHOP with Adeline.
A bouquet of home-grown daffodils from one of those friends and a homemade dinner from the other.
A fruit plate and my book waiting for me. Savannah can tell when Mommy has had "a day."
Listening to Savannah begin to soar with her piano.
I must now move on to the negative aspects of a very long day.
I decided to take Adeline to CHOP for a speech evaluation. The speech pathologist came highly recommended and Adeline is obviously behind in the speech department. We canceled our first appointment because Adeline was sick and decided not to cancel today because the next available appointment is in September. Adeline is congested and out of sorts. She had OT today and was very distracted and off of her game. I knew the appointment was going to go poorly but never did I dream that it would go as poorly as it did.
After farming my kids out to good friends, Adeline and I headed into Philly, through crazy construction and ended up being an appointment that wasn't on the books. After everything was rectified and an hour of waiting had passed we were in a little room that was set up for testing. Adeline was well into her usual naptime, not eating and clearly agitated.
We started off by explaining Adeline's history, her road in the NICU and services she is currently getting. The therapist kept asking questions about her tone and motor deficits which made her "greatly concerned for her speech development." Soon we were testing language which entailed pointing to pictures and following commands. Adeline couldn't sit still, something that plagues every evaluations that is done in a new environment. At one point she put her head back and said, "night night." She was really done with the testing before the testing was a quarter of the way through.
When Adeline was asked to point at pictures she did so but not precisely. She has a hard time being exact in her pointing and is always tapping and not resting her finger on the page. Her regular therapists and I seem decipher what she is pointing at because it isn't like she points to a shoe on a body when trying to indicate a hat. She might hit a nose when trying to point to a mouth if the face is small but she will make her way on up to the nose in a tap or two later.
Today, I got a lot of strange gazes from the therapist, some eye rolling and comments like she, "she has no idea what she is pointing at." I disagree. The therapist thought she was "playing around" when in actuality she was seeking sensory input by her constant motion. I has trying very hard to rein her in by swinging her and repositioning her in the chair. It was pretty clear the therapist didn't have the time of day to accommodate Adeline's vestibular needs or recognize that a portion of her lack of attention was due to her new environment and the distractions it provides. Adeline isn't your typical child.
Moving through the language test brought us to a point where the therapist said, "We are going to move through this quickly because she isn't going to be able to do any of it." She was wrong. Had she taken the time to use a commanding voice which would rein Adeline into the directions, Adeline certainly could have pointed to the chicken that had "no eggs." Instead the page was flipped and she asked what the child was doing in her high chair. Adeline said, "eat," and I know the preferred answer was supposed to end in and "ing." The page was flipped and I was ready to flip out!! I asked the therapist to go back and point to the other two pictures. She pointed to a child sleeping and asked Adeline, "What is this child doing?" Adeline said, "Sleeping!" Since when are therapists supposed to assume what a child can and can't do when having known them for 30 minutes.
The test moved to colors which Adeline can pick out of a group but not label. The first color that was asked was orange and Adeline doesn't know orange yet. The page was flipped and I, again, asked her to go back. I told the therapist that Adeline knows some of her colors. Well, Adeline was all over the place and said, "no color" and kept pointing randomly. I got the "See I told you so look from the therapist" coupled with, "Well today she doesn't know her colors." Give me a break.
Finally the speech part of the test started. Adeline was asked to repeat words and sounds. I jumped her after every repetition which fed her vestibular need and kept her on task. She was great considering her expressive language could use some work.
The test ended with the therapist saying, "Well maybe her speech scores won't be as bad as I thought they would be." A two minute pause of scoring followed. "I was wrong, they are pretty bad. Are you familiar with the test and where her score puts her. It is really low."
Nice delivery don't you think?? Who does this in a professional setting that is centered around kids with developmental issues.
I was treated like a looser parent when asked if I had taken Adeline to a developmental pediatrician. Clearly, the therapist thought Adeline should have a diagnosis and I was just too ignorant to take her to a doctor to get one. I responded with, "Yes, I have been to the preferred doctor from this hospital and one from Kennedy Kreiger." The therapist was surprised when I said that neither doc thought a diagnosis was eminent. I asked her what diagnosis she was fishing for and the questions was ignored with the response of, "Well they must just be classifying everything as a developmental delay."
I was furious by then end of it all. Adeline was off the wall and grunting for her bottle. When not crazy tired and frustrated she would have most likely used words but her grunt was enough for the therapist to say, "So she doesn't use language routinely?" I went on to have her define routinely as more than 50% of the time. I then explained that it simply wasn't true and that I must have been wrong to assume that terrible twos cause frustration etc. and that all two year olds ask every time when they want something and NEVER use an utterance. Please take in all the sarcasm here. I am sure it doesn't come through as well as I would like. I must note that I put Adeline in time out for her grunting/fit throwing behavior over the bottle. When out of time out she nicely said, "Open please." Not routinely speaking my you know what!!!!
My day in a nutshell.
The one thing we did walk a way with that was beneficial was a referral to a speech classroom in Bryn Mawr. It is in the same location that the girls spent the later half of the NICU stay, about 45 minutes away. It is pretty spendy and transportation nightmare but we are looking into it.
Sunday, April 5, 2009
Just to Clarify
I've gotten some pretty strong feedback about the pictures I posted of Adeline. Some hope she never reads that I thought she wouldn't look cute. Even her Daddy thinks it is a bit harsh to have that out there in cyberspace.
For clarity's sake. . .
I have loved that child since day one. The NICU was an unexpected and very difficult road. Adeline was born very under developed. She barely resembled a baby when laying in an isolette next to her sister that was double her size. Adeline spent weeks and weeks on C-PAP (far more than the average 27 weeker) which squeezed her head to the point of malformation. I still remember the day the nurse took off Adeline's hat and mask so we could actually see what she looked like. It had been nearly five weeks since we last saw her naked face. We were stunned at the toll the mask had taken. It was pretty hard to think that there wouldn't be long lasting effects.
Regardless of looks, at this time we were still hoping Adeline would walk and talk. I was praying for her to make through life without a wheelchair. I had such visions in my head that were a far cry from normalcy. My heart was broken from what I envisioned her having to endure in school and later on in society.
The prospect of profound disabilities coupled with an extremely malformed head (so much so that I never shared the picture we took that day) left me pretty hopeless in the looks department. It certainly wasn't top of my list but I can't deny wishing that she would be cute if she wasn't going to be "normal." I just figured it would make others more accepting of her in school. Vain I know. I never admitted to being of sound mind when my babies were in that NICU.
Fast forward to now. I am sure you can imagine how overcome I am when I look at a picture of Adeline like the ones I posted last week. I never imagined her being beautiful, and beautiful she is.
For clarity's sake. . .
I have loved that child since day one. The NICU was an unexpected and very difficult road. Adeline was born very under developed. She barely resembled a baby when laying in an isolette next to her sister that was double her size. Adeline spent weeks and weeks on C-PAP (far more than the average 27 weeker) which squeezed her head to the point of malformation. I still remember the day the nurse took off Adeline's hat and mask so we could actually see what she looked like. It had been nearly five weeks since we last saw her naked face. We were stunned at the toll the mask had taken. It was pretty hard to think that there wouldn't be long lasting effects.
Regardless of looks, at this time we were still hoping Adeline would walk and talk. I was praying for her to make through life without a wheelchair. I had such visions in my head that were a far cry from normalcy. My heart was broken from what I envisioned her having to endure in school and later on in society.
The prospect of profound disabilities coupled with an extremely malformed head (so much so that I never shared the picture we took that day) left me pretty hopeless in the looks department. It certainly wasn't top of my list but I can't deny wishing that she would be cute if she wasn't going to be "normal." I just figured it would make others more accepting of her in school. Vain I know. I never admitted to being of sound mind when my babies were in that NICU.
Fast forward to now. I am sure you can imagine how overcome I am when I look at a picture of Adeline like the ones I posted last week. I never imagined her being beautiful, and beautiful she is.
Wednesday, April 1, 2009
How Does Your Garden Grow?
Since it looks like we will live in this house through the summer, I decided the kids and I should start a garden. It is more for the process than the produce but I would love to be able to eat a few of the veggies. We will see how green our thumbs are.
The girls and I went to Walmart last night and picked out some seeds. It was very hard for the girls to ignore the flowers and focus on produce so we compromised and did a little of both.
Today, Savannah and I started the seeds inside. She helped plan and organize the mini green house with her idea of rows. She had a lot of fun discovering the differences in seeds.
Because no project that lends itself to science would be complete without a journal, I had Savannah start a Seed Journal. We picked four of our seeds to sprout in a clear bag so that she can see the differences in the roots and sprouts. Much harder to ascertain when in soil. I had her draw her hypothesis and she is currently at my side asking me what we can do next. I guess waiting for the seeds to grow is too much for her. This will not only be a science lesson but a lesson in patience as well.
Where does she come up with this?
As I was uploading the pictures of Adeline for the previous post, Savannah sat beside me looking through an album I put together while in graduate school. She asked how old I was and I told her around 21. She responds, "Wow, so that was the first time you drank beer huh?" Of course my response was, "Yes," just like any good mother would say.
Miss Bellie Belle
I never thought Adeline would look normal and certainly not cute. I stand corrected!!!
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