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.

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.

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!!!

Art Work

I never understood the magic of children's artwork until the children became my own. I have always appreciated the talent, patience and creativity but never have I had a simple drawing take my breath away and well my eyes with tears. This picture did. Savannah will never know what a magical moment it was when she handed me a picture of me and her daddy on our wedding day.



These other two pieces have made me stop in my tracks with warm fuzzies from my head to my toes. The first is self portrait that Savannah drew for her sisters. "Just so that they remember what I look like and don't miss me when I am not with them." The second is portrait she drew of me. She loves to draw me over and over again. It is magical to be loved by someone so much that they want to create you on paper over and over again. I guess I should also mention that I think she is pretty darn talented to. You should see the book (chapter book she would tell you) she is writing and illustrating about protecting our environment. She amazes me each and ever day!

A Weekend as a Family Unit

We were able to enjoy a wonderful weekend as a family of five. Daddy had very little work which allowed him out of the desk shackles. We had no plans other than to just be together as a family.

One of the most exciting events of the weekend was Savannah's first piano lesson. I was so proud watching her listen and learn her way through the keys. We bought her a timer to set for 10 minutes of practice time each day. Each time it beeps, she is clearly disappointed that practice time is done. We will see how long this continues.

Friday night ended with a cul-de-sac get together. Before heading over, we discovered that all three girls love quesedilla with taco meat. It is always fun to start the night off with a fuss free dinner. Soon after, we threw together a tray of nachos and headed out. Good friends, a couple of beers and kids playing with other kids is my idea of a nice evening. This was the cul-de-sac's first emergence since last fall and it was very nice to see how delighted the kids were to play with one another. The twins have made a lot of headway as they were pretty independent and self entertained by all of the the other children. That is, when they weren't hovering over the nachos and eating them down to crumbs. Do I dare start to think that I will soon be that parent sitting in a chair socializing instead of constantly being needed by my children????

On Saturday we headed out to Strausburg, PA to visit the train museum. This museum has everything my kids need to stay entertained. There is a huge play room that is flanked with model trains of all sorts of shapes and sizes. Hands on Lego, Thomas, Geo Track, and Kinex displays kept everyone entertained for at least an hour and a half. Just when everyone got antsy, we headed out to see the real trains. Translation. . . very wide open spaces to run, rocks for Lila Grace to hold and stairs for all to climb. We had a wonderful time. It was nice to fully invest in our kids without the temptation of multitasking.

Lila was utterly fascinated by the ball loader/dumper

Savannah spent quite a bit of time constructing a train out of legos

We put it on the test track and worked!









After lunch at Target and a 45 minute ride home, it was already 3:30. I had to work and Alex had a lot to get done after the girls went down for the night. For the first time in the twins' two and a half years of life, they were allowed to skip their naps! This was done in order to get them down super early so Daddy could get to work. Daddy reported a little fussiness at the end of the day but all in all they were pretty good for not taking their usual three hour daytime snooze. The reward, 13 hours of sleep and wake up time of 8:30! Yes, that is an hour later than usual and I was happy to snooze a little longer myself.

Today was beautiful. It was warm and humid. The girls played outside while we worked in the yard. They were covered in dirt and I was happy to see it. I guess spring is making its way into this section of the country.

During today's naps, Savannah and I made a little craft that I thought was pretty darn cute. I got it out of Family Fun and think it is well worth the time required. During this time, Daddy finished up his first home improvement project in well over a year. We took Savannah's closet and made it more reachable and spacious. She loves it and I am thrilled to have the toys up off of the floor. Since we have been in limbo land for over a year now, it is hard to do anything in the house. I guess we are breaking down and making our house a home again since no one seems to be looking to buy.


That is our weekend in a nutshell. Most likely a bit boring to read but for me it was worth documenting. I am always thankful for weekends like this. Kids, few plans and beautiful weather. Why does Monday come so soon?


I have to end this post with a video of Adeline at the museum. She was pushing a button to make the model train go but couldn't hold it down. Thus, the train inched along. This really shows her perseverance. I know I would have given up at the third or forth push.