This is the post that a friend told me I would write eventually. The one about having a child with typical development following a child with special needs. The one that has me simultaneously in awe, and slightly heartbroken.
In a nutshell, a hard post.
This morning I decided to organize Melody’s clothes. She has a few bins of hand-me-downs from friends that are willy nilly all over her room and it was high time that I went through them. On the dresser was a Baby Einstein book with buttons on the outside. When pushed, they play short snippets of classical music. Evan had a few of these books. I remember his adoration of them. I remember being in a store and giving him one of them and he would play with it for the entire store visit. This was Evan’s norm. He could be given a toy- especially a musical or push button one that had some type of cause and effect mechanism and he was good to go. I could go to the basement to do laundry while he sat on the floor of his pack and play at 18 months playing with a musical box, pressing each side over and over, laughing, singing, etc.
So today, when I ripped off the plastic on this book for Melody, I thought, “Hmm, this will be perfect. I will give her this book, she will be so excited to play with this new electronic toy- that I will be able to organize and she will be happily occupied. (and without T.V! score for Mommy!)
I gave it to her, and she smiled through her pacifier stuffed mouth and tapped the book on the cover while looking at it quizzically.
I turned to my pile of clothes and started sorting. A few minutes later I noticed M walking around her crib. Thought nothing of it. Still sorting. Then a few min after that she was in her closet trying to open boxes. Few min after that, she was crawling in my lap, trying to get me to put a headband on her head through several gestures and vocalizations.
That musical book is not magical.
Melody is not caught in its spell like Evan was. (and might still be if given the opportunity. do NOT mention Fisher Price to that kid)
She is more interested in playing.
interacting. keeping joint attention.
throwing fits when she doesn’t get her way.
doing what 14 month olds do.
Not what my child with Williams Syndrome and autism did at that age.
I have these moments a few times a week. Actually probably a few times a day but I don’t dwell on every one. Melody is not a baby genius. She is not advanced. She is just developing at a typical rate. What is true is that things come much easier to M than they did for Evan.
On one of our trips to see Dr. Mervis, I remember her saying that Evan really needed to practice dropping objects into containers. I think he was about 18 months at the time. He would hold things over a box or a bucket but not let go. This was HUGE in the eyes of the early intervention evaluators. I had never thought about it before they pointed it out to me. I can remember like it was yesterday, the night after we saw Dr. Mervis- Evan dropped his elephant toy into one of the hotel room drawers and we all celebrated. It was a massive milestone and we lamented that he waited until AFTER the research study to do it.
I can’t remember the first time Melody dropped an object into a container. It’s as though she has always done it. I can even ask her to retrieve a toy and she will crawl behind furniture to get it and bring to me.
Climbs. Every. Thing
This difference in development is both fascinating and tough. I constantly am asking Todd, “Did you see her do____________??” Did you hear her say ___________? Did you see her point to her body parts?
That is the fun, exciting part. The hard part is the little tiny punch in the gut I get each time I realize what Evan wasn’t doing at Melody’s age. I feel a weird guilt that I didn’t know any better but also……………. relief that I didn’t know any better.
I have heard that the really hard part is when your younger child starts to move ahead of your older child developmentally.
Well, we’ll cross that bridge when we come to it. For now, we are just enjoying our kids and doing our best to celebrate all their achievements and not get caught up in every “Wow, I get it…..” moment that occurs.
Evan and our family has been a part of a research study out of the University of Louisville since he was 18 months old. I’ve talked about it here, here, and here.
A part of that study is a monthly phone conversation that I had with Dr. Carolyn Mervis, the principal investigator in the study. I had multiple forms to fill out monthly, to update Dr. Mervis on Evan’s speech and language process. Some months I looked forward to the call, because I was excited to share the new words Evan was using. Some months I waited until the very last minute to do the forms because I knew he hadn’t made much progress that month, or maybe our lives were crazy that month and I hadn’t noticed any big changes. (ie: Melody’s birth, one of my miscarriages, etc)
Some items would stay unmarked for months, sometimes years, “Does your child use his/her index finger to show INTEREST in something, not just to ask for something?”
Nope. Still doesn’t really do that.
But there was one item that puzzled me month after month.
The item said, ” When your child is playing with a toy, does he/she look at you and then back at the toy?”
I remember admitting to Dr. Mervis one month, that I didn’t quite know what that looked like. I’ll never forget what she said. “You’ll know it when you see it,”
Ok sure, I’ll just figure it out on my own.
Well, until a few months ago, I don’t think I really knew, but I do now.
Look at me, Mama!
I know now because Melody does it, all day, every day. She crawls around playing with toys, standing up, cruising, playing again, all the while, she looks to see if I am paying attention.
So that is what she meant.
Evan looks at me. We cuddle together, we sing, we play rough house games and we check in all during those times. But “social referencing,” or checking in with your play partner, loved one, etc while interacting…it just doesn’t come as naturally to him. He does it more now, especially when in a situation where he is not familiar. He might look to me, because he needs comfort or security.
Melody does it because she is a typically developing 9 month old who wants to make sure I am paying attention. Just because.
Sometimes this feels amazing, exhilarating almost. To know that she is “on track,” that she wants to make sure I am there. Something we still “work on” with Evan. We have to be intentional about encouraging referencing and the motivation behind it. To know that it won’t be so hard with Melody. (not that she won’t have her own set of hard)
Sometimes I feel a pit in my stomach. I feel guilty that I am excited. I realize how incredibly hard Evan works for all his milestones.
Melody is standing on her own, and almost walking at nine months.
Evan walked at 25 months. I can remember it like it was yesterday. It was so exciting.
I know….they are different people. And not just because of their chromosomal makeup. They are different genders, different personality types, etc. I shouldn’t compare.
But having a child with special needs born first, it is hard not to.
I remember being pregnant with Melody and talking with other friends who had their child with Williams Syndrome first, and than a second child without special needs. They said it would be so different. Not bad, not good, not better. Just different.
I couldn’t agree more.
But I will say this, having the two of them together, is waybetter.
“It’s learning time!……………..It’s music time!………………It’s game time!……………………..”
Probably his favorite memory from the holidays was finding this waiting for him (WITH BATTERIES) at Mom-Mom’s
Anyone with children, or daily exposure to young ones- has probably heard those phrases coming from a few different toys. Fisher Price has done this very lovely thing and used the same sing-songy female voice to say “It’s learning time! It’s music time!” when you press certain buttons on their toys. Most distinct examples are the Laugh and Learn Puppy and the schoolhouse frame you see in these pictures.
Evan loves this toy. No, he LURVES it. With every ounce of his bouncing, joyful being.
Here’s the catch. I do NOT love it.
In fact, I get a knot in my stomach when I see it in the store or at someone’s house. (please do not feel badly if Evan has played with it at your house, believe me, this is my hang up, not his)
I used to love it.
Evan started a cause and effect game with us using this toy. He would open and close the mailbox until he would get the right combination to produce the alphabet song. Then he would glance at us (mommy and daddy) to wait for us to sing the song along with it. We were so tickled that he figured that out and he was connecting with us through this game. This was when he was about 17 months.
Notice the abundance of musical, electronic toys. This was before we visited Dr. Mervis and were advised to get rid of all the toys that had on-off switches and incorporate more “old-fashioned” toys. This suggestion was made to encourage Evan to do more engaging play that required him to use his imagination and also communicate with us when he needed help.
Herein lies the title of this entry. When Evan encounters this toy, or any toy that is similar in fashion- one that has a switch that turns on music, action, or lights, he becomes entranced and very involved in the toy. It is difficult to get his attention and even more difficult to elicit any communication.
My heart literally ached on Christmas afternoon when my dad’s wife (he calls her Mom-Mom) came in the room to greet Evan and he didn’t even look at her. Not a glance. He was busy roaming around the schoolhouse frame and turning on and off those switches he remembered so well. She hugged and kissed him anyway and went back to cooking. Honestly, she did not seem to be bothered by it at all. She was happy to see him and thrilled that he was happy. And there I sat, knot in my stomach, blinded by the diagnosis. Blinded by the lack of engagement that we have been working so darn hard to increase. I didn’t see my happy son who was being pleasant, even-tempered, and occupying himself with a toy he loved. I was seeing the disability, the developmental delays. The very thing I preach about looking past.
There are moments, days, weeks, that can go by where I am thrilled by Evan’s progress, excited to discuss Williams Syndrome with friends, touched by the smiles that Evan elicits from strangers. Then there are days like this. When I wake up, filled with hope and expectations of a wonderful day spent with family. And by the end of the day, Evan is in the backseat of the car, scripting away, “It’s learning time!” It’s music time!” and I have to fight back tears. The word defeated feels accurate and awful at the same time.
(As I type this I can hear him singing along with his beloved Signing Time DVD, which also repeats, “music time, signing time, story time,” etc over and over. He does love Rachel. I’ve often said he would run off into the sunset with her or with the ladies from Baby Babble.. but that is another story.)
A quick moment I grabbed
Lately I have been having a more difficult time embracing the joys, embracing the progress that I blogged about so recently. I know it is due to the holidays. Due to the stress I was under at work this past month. Due to the hustle and bustle of non-stop gatherings, entertaining, and changes in schedule that occur for everyone this time of year. I struggled with whether or not to write about it.
Because I do strive to see the positive slant on things.
I do realize how incredibly blessed we are.
But it would be a disservice as a writer (and a deeply sensitive one at that) to ignore the ugly truths that creep into our lives. To not acknowledge that being a parent of a child with special needs is hard. Capital H. Hiz to the ARD.
Being a parent is Hard.
Being a human being is Hard.
But being honest about it is freeing. Knowing that the Hard is worth it. Knowing that there are plenty of others out there who are also dealing with the Hard. And we don’t have to pretend that it is easy.
We just have to admit that this happens too:
Thank goodness there is also Joy. With a capital J.
This weekend we took Evan for his hippotherapy evaluation. Yes, that means exactly what you think, he is going to do therapeutic activities on a hippo. Just kidding…..Or maybe you are thinking he is going to be hypnotized, ala hypnotherapy. Neither is correct, but don’t feel bad if you aren’t familiar with the term either.
Hippos is the English translation of the word horsein Greek. Thus, hippotherapy is the use of a horse in occupational, speech, and/physical therapy. (I did not know the etymology of the word until I started doing this blog entry)
Not sure about this horse stuff, Mama.
Of everything we have tried, this was one therapy that I was super excited for, but I also had no clue how it would go, or how effective it would truly be. I knew Evan would enjoy being around horses and spending time with adults and young people at the farm. I also have a love of horses and I have ridden horses several times in my life. But I had a hard time imagining him doing well on a horse, and I wondered how exactly it would help him to progress. When he wasn’t walking- not all that long ago!, both his physical therapist and Dr. Mervis, the researcher we see in Kentucky, suggested that we look into hippotherapy. Dr. M’s exact words were, “Get him on a horse.” She felt it would help strengthen his core., which in turn would help with his language development and walking. I started looking into it last spring. I found a lot of local places that did recreational horse therapy, but not hippotherapy. Apparently they are similar but it is harder to get insurance coverage with the former because it is not done by a licensed therapist. I called around, asked questions, looked into our insurance and decided it would make sense to wait until the fall when we were back on my insurance, which has better coverage overall.
And then as luck would have it, one of my new warrior mama friends (who I practically cyber stalked-a story for another day) suggested this horse farm. She had taken her daughter here for hippotherapy and raved about it. She also was very happy with the support the therapist gave her as far as getting insurance to acknowledge the therapy and get most of it covered. Sounded like a win-win situation to me! So off we went to do a barn tour and then an evaluation was scheduled.
We set off to Brandywine Occupational Therapy and the wonderful Miss Lauren. My mother went with me, which was very helpful. The occupational therapist asked a lot of questions and it was nice to have a second pair of hands to keep Evan close by while we were having him climb on the playground equipment and walk around. Her extensive knowledge in the area of occupational therapy is evident and it made me feel very at ease to know Evan was in good, professional, educated hands at this facility. She used technical terminology and offered reasons for things that Evan does, while also giving praise for different things he has recently started to do. It’s always heartening to know your child’s therapist really knows her stuff. And Evan’s really do.
At first, I was worried Evan was not going to dig the horse experience. He started this low whine when they put his helmet on, and he kept looking around like he wanted to anywhere else but at this farm. Then they had him use a mounting block (bc she thought he could handle it-which thrilled me) and got him up on the horse. He kept doing this low whine and squinting his eyes, like he does when he doesn’t like the food you offer him. My heart sank, because I really had such high hopes for him. (which translates to high hopes for me- I need to work on that) Luckily, as often happens with Evan, the waiting and anticipation of the activity can sometimes cause him to whine and get impatient. But once they started to move, and the horse began to ebb and flow beneath him, it all changed. After a few short moments he started to say, “Whee!” and “Neighhhhh.” His whole demeanor changed. He held on tightly and kept his back erect the whole time, not waivering at all. I thought for sure he would try to get off, or lean side to side but I was very wrong. The therapist started to try different things, like going diagonally across the ring, doing figure eights, and stopping and starting. When she would stop, she would ask Evan to tell the horse to “walk.” He just kept saying, “Neighhh!” Then she suggested saying, “Go, Vixie!” (the name of the horse) After two times modeling for him, he did it independently when she stopped!
I was floored. We are working hard on two word combinations, but I never thought he would do one so quickly, and with a new therapist, on a horse!!! But looking back, that is probably precisely why he did respond so quickly. No need for bells and whistles when you have horses! (thanks Aimee for that realization) He probably spent about 15-20 minutes straight on the horse with no signs of fatiguing. He was especially fond of saying, “Hi! How are you!” to the young lady who was helping on the other side of the horse. He didn’t tire of looking at he and batting his big blue eyes at her and smiling before shouting, “Neigh!!” all over again. The natural feeling of riding a horse is so significant for a child like Evan who seeks sensory input all the time. He loves movement, bouncing, being upside down, rocking, etc. And a horse provides all of that in a controlled, organized way.
Sorry for the shakiness, I was trying to keep up with them with my cell phone camera. If you listen closely at the end, you’ll hear Evan exclaim, “Vixie!”
So the biggest deal of the whole experience was when he had to get off the horse. She said “Ok, Evan, we’re all done now, we have to get off the horse.” He responded by gripping as hard as he could onto the handles and sticking his bottom lip out as far as he could. She pulled him off, handed him to me and he went in to full blown teary meltdown. He wanted to get back on her so badly. I can’t really put into words how this hit me emotionally. I can say I definitely welled up with tears. Not so much because I was sad for Evan, but more because I was so excited at how much he connected with the horse, and how he truly was sad he had to get off. Evan has such an easy going temperament. He does not throw a fit when I drop him off at school, in fact, he will walk up to almost anyone, saying “Hi!” and he does not seem to lament the fact that his mommy or daddy are leaving him. (believe me I know how enviable that is) But that also means he does not display other typical behaviors, like an affinity for things that mean something to him. So to see him feel true sadness because of how much he LOVED being on that horse, it just filled me up inside.
He kept saying, “Vixie, Vixie,” on the way home and I showed him the video a few times. So now when he sees my phone, he says, “Vixie, vid-ee-oooo”
I can’t wait to take him again.
And to see how she is going to work on self feeding goals on a horse.
This is the face of a happy little boy. He is happy because he is getting to watch Baby Babble 2 for the second time today. This is not a typical occurrence. Evan watches one or two things a day, normally part of a Sesame Street and either one of the two Baby Babble dvds. But this was a a second watching in the span of about two hours. Why, you ask? Evan pointed today. He used his index finger to indicate his needs. He did it twice. Once to show he wanted more of a snack, and once to indicate he wanted me to play the Baby Babble dvd. Pointing is something that comes naturally for children without disabilities. In fact, it typically comes before talking. With Williams Syndrome it is quite the opposite. We model for him all the time but I haven’t expected a point from him for quite some time. In fact, Dr. Mervis indicated that he might never be a pointer. So today, when he cruised all around the entertainment center, dropping books onto the floor, and repeatedly saying, “m-ay, m-ay,” I knew he was trying to tell me something. He then walked a few independent steps over to me and said it again and again. I walked over to the TV area to see if I could figure out what toy he wanted. He leaned and reached his arm out to the TV and clearly extended his index finger and said it over and over. Then I knew. I have been saying “play” when I turn on a dvd for him and that is what he was saying and what he was showing me. Warmth spread throughout my whole body and I had to sit down with him because the tears came right away. And of course, even though he clearly did not need another viewing of this stellar programming, I turned it on for him and took some pictures of his contented little face. Moments like this are what it is all about. A point, and a “m-ay”
Hopefully you sang along to the post title to the tune of this song. When I sing that with him, he gets so excited that he fills in the word me before I even get to it. So adorable and so Evan. Sooooooooo…..the big news is, Mr. Man took more than just two wobbly steps this week. He walked across the living room during a physical therapy session. AND, the following day in music class he toddled all over the place, walking from person to person. He is not a “walker” yet, he still falls or sits down in between little bursts but this is huge for him. We just got back from seeing Dr. Mervis, the research geneticist down in Kentucky, and she and another highly regarded geneticist Dr. Morris both felt that Evan would benefit from shoe inserts to help his balance and pronation. So the minute we got home, he measured him and ordered them and they arrived yesterday. So you are probably thinking, wow, that is great, you put the inserts in and they helped him right away! Funny thing is, we hadn’t even tried them yet. I just took him today to get new sneakers bc his old ones were far too small to accommodate the orthotics. Excuse the fuzzy phone picture below, but there he is showing off his new kicks. Now Mommy and Evan can wear New Balance shoes. His are FAR cooler than mine. (and that is not a joke-my sneakers often resemble those of individuals far older than me because of my elderly ankles and feet) The best part is that they fit the orthotics great, and they were cheaper than the Stride Rite pair he was wearing. The most amazing part of all of this, is the feedback I received from his little video. I, of course, rushed to the phone after PT was over and called Todd to tell him the good news and I sent him the video. Then I sent it to all the grandparents and close family members. I posted it on the Williams Syndrome Support group and sent it to a bunch of friends. The responses I received were so heartwarming and touching. Lots of “Yays!” and “I’m so proud of him, and of you!” and my favorite, “Happy tears!” I started tearing up several times just reading the responses. It just reminded me of how precious this little guy is. He is so loved and cared for, and that is really all a parent wants for their child, right? That he would be loved and cared for by the people in his life. And Evan has that a million times over. I’ll keep saying it, thank you so much. We are some lucky folks.
As I said before- she started out the conversation by telling us that when comparing Evan to other children his age with WS, he is doing AT LEAST as well as those children. She said she always starts out by looking if there are any big delays or discrepancies and we do not have to worry about that. That was the most comforting thing to hear. That, in addition to her laughing at the thought that he might be non-verbal and also stating bluntly, he certainly does not have autism. Both of those possibilities could coexist with the diagnosis of Williams Syndrome but she does not think either is accurate with Evan. The overall feel of the whole interview is that Evan is doing what he should be doing based on his age and diagnosis. The not talking and not walking are both typical and not worrisome at this point. However, that does not mean she did not offer many suggestions of how we can better support Evan’s development based on her research and observations of him during the two days.
Suggestions from Dr. Mervis and her team:
Continue work on releasing and giving items to us- dropping into containers and understanding the terms associated with the activity.
Work on strengthening his core strength- this is a biggie. She emphasized that this will improve his speech, his fine motor, walking, etc. His OT has said that his low tone will always make this area tough for him.
Get a PT assessment and see if the OT is doing enough cross-over work in that area, or decide to add PT as another service he receives.
Make a photo book of all Evan’s favorite items and go over it with him several times daily. We have a photo book of his family members and he does love to go through that- but I am going to make him a new one with pictures of milk, ball, duck, doggie, etc. She kept saying, “Make language meaningful.”
Stay away from colors and numbers and focus on concrete items when working on speech with Evan. Abstract concepts like color, size, etc. can be confusing and make his speech development more difficult.
Use more “old fashioned” toys with him. Stay away from the ones that he can manipulate easily and that he will sit and open and close the same thing over and over or make the same music happen over and over. She suggested blocks, books, play kitchen items, dolls- toys that encourage the use of imagination.
Label everything in his environment, and talk about things as we are playing, “Evan has the ball, now Mommy has the ball. Mommy is pushing the ball, now Zoey is running!”
Babble back to Evan using exactly the sounds he uses. After you go back and forth a few times, babble to him using sounds from his repertoire, don’t always use words that he has not said yet. (this was something I learned from reading a friend’s blog, and has started to do, but not enough)
Work on strengthening his lower jaw, the speech therapist said his muscle tone in that area is the lowest. This is probably contributing to his issues with swallowing.
Use hand over hand to show him gesturing and pointing.
Look into Hanen Program- “It Takes Two To Talk” Luckily a very nice WS mama is lending it to us to read.
Hold objects near our eyes when identifying with Evan- and encourage him to make choices. “Do you want the ball, or the book? “Great, you chose the ball, Evan!”
And the most important nugget of knowledge we received was,
Enjoy Each Other
” Remember, he is your son. You are a family. Enjoy him. He is not a project.”
This CSBS session really seemed to take a lot of Evan, probably because he was in the high chair the whole time and presented with so many different and new things to manipulate. We took a water and bathroom break and then headed into a cute room with plenty of toys and books and a nice comfy carpet. I was told to play with Evan like I would at home for 30 min. The only instruction I was given was to try not to have my back to the cameras, and keep myself neutrally placed so that they could see Evan. We started off and I could tell within about 5 minutes that Evan was working hard on a dirty diaper. So after a quick change, we started up again and got to some serious playing. His biggest interest was in two trucks that he was very focused on pushing, and figuring out how to open and close the hatch. I would introduce puzzles, balls, books, and he would play with them for a few minutes but eventually he would look for the trucks, even when I kept placing them in different locations throughout the room. Of course I tried my best to be as “natural” as possible, allowing him to choose activities he was interested in and facilitating his playing but not pushing it too much. But I would be lying if I said it wasn’t in the back of my mind that I wanted him to show all of his “stuff.” 🙂 Even though I am sure the people watching on the other side of the camera are looking for things that I am not even thinking about. Todd said that the speech therapist shared some tips with him, how I should continue to emphasize vowel sounds and initial consonants. When I was saying “baaa” for sheep, I put too much emphasis on the aaaa and she said I should keep it short, “ba…ba….”She liked my gesturing and felt I was doing a lot of things right, which was really nice to hear. When you don’t receive feedback from the person you are with all day (besides giggles and babbles), it can be difficult to tell if you are doing the “right” thing or not.
Where the magic happened.
It was very obvious that Evan desperately needed a nap. Evan only had one more round of the Baby Thinker left to complete. Todd and I still needed to do our exit interview with Dr. Mervis. She suggested that it would be best if Evan were to get a good nap in and we could return in a few hours. Well, best laid plans, right? we went back to the hotel, put him down (he was OUT minutes into the car ride) and within about ten minutes he was up and whining. We were watching TV and following the events that I blogged about here. We decided he was not going to take his nap so it was better to get ourselves moving and get back to the lab to finish out our time there. My in laws decided they wanted to be a part of the exit interview,which was highly encouraged by Dr. Mervis. She mentioned several times how she loves when other family members become involved in the child’s life, and she lamented that it does not always happen. As I constantly state, we know how lucky we are. Their support and help on this trip and always is invaluable. Evan went off with some of the students to finish up baby thinker and they were armed with many things to keep him occupied while we talked with Dr. M.
In the hotel room, Evan being entertained by a video of his friend Andrew
All of the time we spent down there was basically leading up to this one on one time with Dr. Mervis at the end. I brought down Evan’s IFSP- his educational plan that the Early Intervention team created based on his assessment in June. She said she typically does not go over age equivalents with parents because they are not accurate and not helpful. But because we had age equivalents from June’s testing, she said she would give ones she received from her testing so she could show progress. I will not go over everything she discussed with us, because it would be tedious for you to read, but I will highlight some things in my next blog so it is easy to read and find for other WS families who might benefit from the suggestions.
Daddy and Evan posing at the Louisville Slugger Museum
To sum up our trip, we are very happy we went, and we are going to continue with the study. Our next trip down will be around Evan’s second birthday. Although portions of it were emotionally and physically exhausting, it was a good decision for us as a family. It was a reminder of Evan’s delays, but also a reminder of his strengths and it showed just how brave and hard working he is to be able to do all those activities in two days and not have a complete meltdown. Check out this entry to read her suggestions and advice to us.
So….I’m not quite sure why- but I’ve been avoiding blogging since we returned from Louisville. I know I wrote while we were there, and I was reeling from the news of the school shooting. I still am. But it just seems every time I sit down to write about our experience with Dr. Mervis and her team, I just can’t put into words what I want to share. Very rarely does that happen.
You didn’t have to agree quite so loudly.
Before I go into it, I want you to see what greeted me in the car at the finish of the experience with Mervis and her team:
I just adore him.
There it is, the reason for all of our worrying, all of our concern, discussions of the future- that little jack o lantern of a face that we somehow are lucky enough to see each day. And he had not a care in the world. In fact, quite the opposite. He had so much attention throughout the research process that he was in his element. He was able to play with new toys, look at new faces, and spend ample time with his Grammy and Pappy who ADORE him and shower him with attention. What more could he ask for?
And luckily, we got a lot out of it too.
As I mentioned before, Dr. Carolyn Mervis does research at the University of Louisville and she focuses on further understanding “cognitive, language, and social development in the context of intellectual disability and in typical development.” Several other families we have come in contact with the Facebook support page and through a list serve have also participated and most have been happy with their experience. We figured it would be a chance to talk to someone who really knows more about what makes our little guy tick. And even more importantly- we hoped to gain knowledge on how to better support him and his development. Of course, secretly, at least for me- I hoped that we would hear that he was the ultimate rock star in the world of 18 month olds who happen to have WS. Hey, the geneticist said he was one of the best cases she had seen when she diagnosed him back in May- so it wasn’t that much of stretch….
How can he not be a rock star with a mom like this? Jeesh.
Well, he was not referred to as a rock star, but the best news we received was that “Evan is doing at least as well as the average child his age with WS.” She made sure to emphasize that any delays he might have in comparison to a child who is typically developing- are completely within the “normal” range for WS. As much as I am growing to dislike the words “typically developing,” I was glad to hear that he was doing well considering his late diagnosis and delayed therapies. She was able to determine that conclusion based on several different tests and observations. On the first day, Evan went in a room with two students who used the Mullen Scales of Early Learning to determine his current level of development. While that was going on, Todd and I went with Dr. Mervis to her office to discuss how the days were going to unfold and also to help her fill out list of questions based on Evan’s communication habits. We also filled out several releases. She explained the whole process and as we went over the communication questions, she gave out nuggets of information while we feverishly took notes. Nothing was necessarily shocking or earth shattering but nonetheless helpful to Evan’s progress. She explained that he was going to be used in another study that takes a look at how babies with WS process faces. He went into the “Baby Thinker” with my mother in law and she held him on her lap for the test. While we were sitting there talking to Doc Mervis (as Todd likes to call her), she received a call from one of the students saying that Evan was extra squirmy. Yep, sounds like him. But he was very good for Grammy and sat through the whole test. They showed him pictures of faces and they videotape him to see what his reaction is, and which faces hold more interest for him. Apparently he was more interested in the female faces, and when they flipped the faces upside down, he could have cared less. I found that interesting because sometimes when playing he will flip his own body around so that he can look at something from the bottom. Not sure what it all means, but it’s not really to convey information for us anyway.
He does love his grandparents (all of them!)
Because the morning was tiring for Evan, he was exhausted and ready for a nap. So Todd and my in laws took him back to the hotel while I participated in a psych interview. They are doing a study on the mothers only because Dr. Mervis said there are not enough men who come with the families so the sample size would not be valid. This interview was far more difficult for me than I had expected. I thought it was just going to be questions about what it is like to be a mom of a child with special needs. That was only one small part of it- the rest of the hour was spent answering intense personal questions about my background and experiences. And of course, since I am honest to a fault, I opened up and was as truthful as possible which can be hard. I felt like I had been hit by a truck when it was over. Thank goodness for Grammy and Pappy, they took Evan for a walk in the stroller, while Todd and I napped for a short while. Friday was another busy day. I went into a room with one of the students and Evan sat next to me while she sat across from him. They completed a CSBS which included several little activities they tried with Evan while he sat in a high chair. Todd and a speech therapist sat on the other side of the two way mirror so he could see everything. It was hard for me, because I couldn’t really interact with Evan unless he initiated it. If he looked to me for help or interaction, I could, but otherwise I had to be really quiet and just be present if he needed me. The funny thing was, I felt like he wasn’t accomplishing all the things they were looking for- and Todd said he felt differently on the other side of the wall. The speech therapist seemed happy with many choices he made and actions he took. That is sort of telling of how hard I can be on myself, bc the whole time I was taking it personally that he was not looking to me for help, or using the bowl and spoon properly during the test, but in reality, he was doing far better than I thought. I need to chill. Lesson learned.
To be continued….the little dude is waking up from his nap……
Yesterday, on December 14, 2012, a horrific mass shooting occurred in a small, unassuming town in Newtown, Connecticut. This unthinkable event has America collectively weeping, shaking their fists, and screaming at the injustice. It only takes a few minutes of reading through the News Feed on Facebook or reading any comments on articles on news sites to see how this has rocked our nation. I know my blog was not created for social commentary but I cannot move past this day without marking it down and making sure that I remember it, and how it made me feel. I tend to be a person who walks out into the world without thinking of the evil that can lurk behind each corner. I drive my car blindly, trusting that the person in the lane next to me will stay in her lane. I walk into banks late at night to do my ATM transactions, thinking for a moment that it probably is not the best time to do so, but the odds of something bad happening are so small, why worry over it? I have used Patco with my child, using the Camden station, with only a small amount of healthy caution that I would use at any public transit stop. Even though I have met stares of disbelief when I mention I have taken Evan on the train, and by myself???!! Typically I chuckle to myself internally and think, ‘Ah, how it must be tough to live in that type of fear.’ So glad I do not. Unfortunately events like today pierce that bubble of security within me in an instant. I feel like a fool for feeling safe when it is possible for an individual to take the lives of 20 children in minutes without anyone being able to save them. My husband could tell I was taking this very hard today, and my mind was elsewhere while we were driving. He kept trying to make commentary on the scenery, to lighten my mood. I could tell he was trying very hard, and I apologized for being lost in thought and explained why. He told me to try not to focus on it too much, that it is a horrible, horrible event, but that we cannot control others. I know he is right. That is my typical response when tragedy strikes at the hand of another human being. There is Evil in this world, but we cannot be consumed with that fact or we will not be able to live our daily lives. But for today, for this morning at 2:51 am when I sit in a Kentucky hotel lobby, frantically searching for some sense of peace to hold onto, I am focusing on it. I feel I must. I must be reminded of not only the evil that does lurk within this world, but more importantly, the fragility of life. I feel thankful that I know life does not end on this Earth. That the beautiful, innocent children and the adults who took care of them who lost their lives are living their second chances in Heaven. That belief, and my faith, however challenged it truly is right now- are keeping me afloat in a sea of confusion and doubt.
Driving home from the second exhausting day of Dr. Mervis’ research study, we drove past many gorgeous old homes in Louisville, KY that were ready to be lit with twinkling white lights and had wreaths on each and every window. My heart sparkled for a moment, remembering how exciting the Christmas season is. I still get that rush of joy and pure happiness that I did as a child during this month of celebrations, surprises, and family. It is not as pure anymore, tainted by life experiences, knowing the materialism that comes with the holiday, etc. But I feel so incredibly blessed to have had the holidays I did as a child, and I realized with a jolt that those children had that opportunity stripped from them. Hopefully at their age they had a few years of memories, but now their families are left with gaping holes and searing pain and sorrow. I thought immediately of my son, Evan, asleep in our backseat. I thought of his future, of his potential to see no race, to lack the social cues and understanding to know why he should not love everyone he meets. My eyes burned with unshed tears, and I fought back the impulse to lose it all together. I felt guilt at how I had been feeling just a few minutes earlier in the exit interview with Dr. Mervis. The words “typically developing children” were used over and over to show comparison with Evan. I have typed those words so many times in IEPs and I just felt so frustrated and pained that now my son will be the subject of that comparison and I will be reading those words and they will not refer to him. They will refer to my friends’ children, to his classmates, but not to him. And I felt horrible guilt that I was bothered by that when 20 families were receiving word that they will not be able to take home their child that afternoon. I picked up my sleeping son from his car seat, and sat with him in a dark hotel room, while he clung to me, asleep and exhausted from the assessments that day, and a lack of nap. I thought of his incredible smile, how it immediately captures your heart, no matter who you are. I couldn’t help but let myself imagine what it would be like to learn I had lost him. And it felt like a knife was turning over and over again in my chest. My internal fists started to shake at the universe. Who cares if he is not “typically developing?” I know it is human to have those moments and I will not beat myself up over it (well at least not for much longer). But to waste time over words, when I have this living, breathing, example of pure love sleeping in his ‘pack and play’ right now, just seems disrespectful to the families who have lost their loved ones. If they had one more night with their child, with their mom, their dad- they would not waste it worrying about words on a paper or words being spoken in a research lab. And I realize that is all I can do right now. Appreciate what I have and keep trusting. Keep using Patco from Ferry Ave with my healthy sense of caution. Keep driving down the highway trusting that the cars around me will follow traffic law. What can my worry or fear do for me? Nothing that is helpful or honoring to those who are no longer with us and their families who grieve. I will continue to love, continue to trust, continue to believe. It is the risk I must take as Evan’s mother. ***********************************************************************************
I will sum up our trip and the helpful information we received from Dr. Mervis and her team- probably sometime next week. Please know that my issues with the terminology being used to describe Evan’s progress are my own personal hang ups from being a special education teacher for over ten years. We had a really wonderful experience down here and I think Evan’s progress will be enriched by the information we gathered. I just wanted to include my thoughts from today because I feel it is important for me to remember this, and have it to reflect on in the future.