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.
I am in the process of writing up an entry that is really special to me, but I really need to concentrate on it, and tonight I am heavy lidded. Thus…I thought it was time for a photo dump. Some of these pictures are on Facebook, but not all our readers are on FB so I thought it would be nice to include them there. We just got a new lens for our camera so a few of these at the bottom were practice shots Todd took using the new lens. We have a lot to learn, but already I can see the difference in the quality. Enjoy!
Grammy (possibly turning into Mimi) and Evan cuddling in the Smokies
Yup, we are. But only for the picture.
Daddy and Evan outside of Louisville Slugger Field
On one of our hikes. I can see another glimpse into the future in this picture.
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.
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.
I was going to be secretive about the pictures we took at the Christmas tree farm this weekend because I had grandiose plans about using some of them for the Christmas card and/or gifts. Alas, the Christmas card creation went in a different direction- so no need to hide them! Don’t you love Evan’s cute holiday sweater and Todd’s sexy professor cardigan? I love them. I think he got a little offended the first time I told him that, but I clarified that I truly meant it as a huge compliment. Can’t professors be sexy? 🙂
Up close and personal with a very docile donkey
In his glory with a large wheel
Anyway, so I just wanted to share some exciting things Evan has been up to in the past week or so, and to mention that the big Louisville trip to see the WS guru Dr. Mervis is imminent. I probably will not blog again until we return and I will share about our trip. It will not all be research, we have a bunch of sight seeing type things to check out too. Todd and I had a chat about the trip yesterday. He grounded me a bit by reminding me that the research team needs this experience with Evan as much as we do, if not more. Even if we do not get the information we are hoping for- we will have helped a larger cause- and hopefully parents of children who are diagnosed with Williams Syndrome 5, 10, 20 years from now will have a larger knowledge base to work from. At the very least, Evan will get to play with some new toys, we will eat some Kentucky BBQ and learn what it is like to travel 8+ hours in the car with 4 adults and a toddler. 🙂
Perusing The Night Before Christmas
This past week Evan surprised me by rolling his hands independently during “The Wheels on the Bus.” I was so caught off guard. I was feeding him in the high chair and absentmindedly singing and all of a sudden he started “rolling” his hands. I was so excited. Then I tested it out and sang “Pattycake” and he did the same thing during the roll it part. It is so amazing how much babies take in when you don’t realize it. I have always said his receptive vocabulary is stronger than his expressive and that he watches us and soaks it all in. This movement was an example of that observation because I wasn’t even doing the motions when he did it. Little developments like that keep me motivated to keep on keeping on. 🙂 He is also starting to say “baby” as his main word. I would say that is his first official word- considering that “whee” was more repeating and he will say baby spontaneously. We have used a few flash cards with him and when you show him the baby one, he smiles immediately and makes some sort of sound with two b’s, and most of the time it sounds very much like the word “baby.” He is definitely going through another developmental growth spurt because he is taking forever to fall asleep again and his energy level is through the roof.
Hopefully the next time I write, I will have interesting news to share from our Kentucky experience. Wish us luck in our travels! Thank you again for reading, and for all your support of this blog. It means a lot that you take time out of your day to read about our family.