Archive of ‘special needs’ category
Bear with me, because I feel like I am going to be a little scattered when writing this. Could be the head cold or could be that this topic has been swirling in my head for a while now.
Evan is almost three. Gulp.
Where has time gone?
When he turns three, he loses early intervention therapies (and beloved therapists) and then becomes a part of the school system in our town. As a part of the transition process, we have several meetings with the child study team where we discuss Evan, schedule new evaluations to be done, look at results, discuss how he has been doing. and make an educational plan. The experience of being a special education teacher with my Learning Disabilities Teacher Consultant certification who now has a child with special needs is a whole different blog entry. Phew, it sure is.
But the one thing that popped up of course is that Evan has Williams Syndrome and the school district professionals had never heard of it, nor had serviced a child with it before. I was thrilled when the school psychologist brought along his intern to our first transition meeting and you could tell she had read up on WS. She asked a lot of informed questions and shared some things she had read. Then a few weeks ago I received an email from the school psychologist saying that they had already done a little presentation on WS for some of the teachers at the school and he hoped to educate most of the staff on WS before Evan starts school.
Great! Wow! They are really proactive, they want to learn and be prepared!
Well, that is how I felt at first and that is how I still “sort of” feel. (and believe me, I am nothing but happy with the process so far, they have been great) But I’m finding myself a little perplexed lately. I wear my WS awareness bracelet. I am THRILLED that the drama club in my school district has chosen the Williams Syndrome Association as their community service project. I will easily and happily discuss Williams Syndrome with any person who wants to learn.
But what about Evan?
about 32 months
Evan is so much more than the term Williams Syndrome. So much more than 25-28 deleted genes out of over 20K. So much more than the starry blue eyes, low muscle tone, heart issues, hypercalcemia, lack of stranger anxiety, the constant song in his heart- that can all be attributed to WS, or not?
He is so much more than that, but….he also is who he is partly because he has WS. It is part of what makes Evan the unique individual he is.
Do you see why I said bear with me? This is tricky. Tricky because now he has a label. He has a label and he isn’t even three years old. Teachers can look up WS on the internet the month before getting Evan in class, and assume that he will be overly anxious, overly friendly, and bad at math. Will they see Evan for Evan? Or will they see WS first?
I teach second grade. And I HEART my students. Big time. I am helping to promote a local event that will support the WSA. There is a ten minute clip that pulls excerpts from the movie Embraceable, that I find to be the most amazing way to learn about Williams Syndrome. You can find the clip HERE if you click on the Vimeo video. The teacher I work with asked if I would consider showing it to my class to spread more awareness with them. I was surprised at how I felt when I considered it. I faltered. I felt anxious, unsure. Would the kids understand? They LOVE Evan. When I bring him into school they follow him around like he is a celebrity. The children in my class are all approximately seven years old. Would this make sense to them? Would they still see Evan as Evan or would this new label be what sticks? Does that matter? I don’t know….
I watch the video clip and I cry. Every time. Not because I am sad. More because it makes sense to me now. Because I see my son in those clips. I see little bits of his possible future. I see myself in the faces of the mothers who are gazing at their child’s colossal smile. And I do not feel at all ashamed or badly. But there is still a part of me that wonders by me pushing the label of WS out there, so boldly, so fervently- what could that mean for Evan?
I want him to have opportunities. I want him to be loved, liked, played with, looked up to, laughed with. The same things most parents want for their child. Do I want him to be the poster child for WS? I don’t know. By blogging and putting our story out there, it certainly seems I do.
This is one of those entries where I would just love to hear your thoughts on this. I have heard from other parents who have chosen to not share the diagnosis with certain people in their lives because of different reasons.
Should we give others the benefit of the doubt and hope that they see our children as whole individuals, and not just a diagnosis?
Labels? Should they stick? What do you think?
I feel physical pain when I look at this picture.
This is hard to write about.
Tonight I walk the line.
Tomorrow I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.
I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.
When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time. When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate. When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)
When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned. When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt. When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside. I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon. When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed. I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress. Until, it’s not anymore.
When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy. Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.
But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”
I just keep walking that line.
The line between celebration and worry. The line between pride and guilt.
I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true. But the other side exists. And it can be an ugly, dark spot to step into.
That is why I walk the line.
Striving for Celebration
Where has the time gone??
My stomach lurches. My back is dripping with sweat. I lunge after Evan time and time again to make sure he does not run down the aisle of the theater. I hold his hand and let him lead me to the lobby doors. He loudly shouts, light! light! light! and insists on getting to the “light.” Against my better judgement, I take him into the brightly sun lit lobby and let him run around, making sure he doesn’t touch the trash can, go up the steps, touch the other patrons, run out the front door, you name it. I feel my lip trembling and the warmth of tears touching the corners of my eyes. I feel jealous of the other parents sitting in the theater with their child who is happily watching the show. I then feel guilty for feeling jealous. This is his field trip, and not only that, but it is a live musical performance. I had been incredibly excited for this day, to share something I love with my son who has an uncanny connection to music. I was SURE he would love the experience. I hear familiar music ringing in the background. A song Evan knows! I was sure he would be happy if he heard the music, I was sure I could sit back down in the seats and join his class for the last five minutes.
I was wrong.
I tried to sit, and E crawled up my chest, and tried to get away from me yet again. He carried on loudly, protesting and wriggling all over our laps. Todd leaned over and said that we might as well leave, since it was almost over anyway and Evan clearly did not want to be in the seats. We were fighting a losing battle. We scrambled to gather up our things and get out of there with some sense of dignity. The parents, teachers, and children from E’s school watched the show intently, with popcorn bags and drinks in their laps.
His car seat buckled, his bags strewn about the back of the van. I had to go to work to get in a half day and Todd was bringing him home. I kissed Evan goodbye and felt my eyes film over. Todd asked if I was okay but I couldn’t muster the words. I realized that my reaction didn’t seem to match what had happened. Evan is a two and half year old. Two year olds don’t necessarily want to sit for any length of time. Why did this hurt so much?
I walked through the stinging cold wind and felt my cheeks burn. My stomach was tied in knots. All I wanted to do was sit alone and cry. It had been a while since I felt that way. Since I felt like we were outsiders. There was a sea of happy, healthy children who could watch a show, communicate their needs clearly, and be engaged. And Evan was hanging out in the baby pool, splashing about, not caring if he was a part of the sea or not.
My friend came over with her son over the holidays. Her son is only a few months older than Evan. They are buddies. We shared pregnancy adventures, new mom doubts, laughs, and tears. She is one of my dearest friends. While our boys were infants, her son would achieve milestones months and months before Evan.
Buddies for life
It made sense at the time because he is ten weeks older. I never worried or focused on it. I remember thinking, Evan would get there in his own time. After receiving E’s diagnosis, the gaps became wider. Well…actually they always were wide, I just accepted that they would not close in like I had thought they would. Her son is extremely verbal, always chatting,using multi-syllabic words, complex sentences. He tries to talk to Evan and Evan bounces happily in front of him, gazing at his buddy with awe and love. He often will try to say something, but it comes out more like a babble because he is so excited. I love having them together, since they have known each other since they were in our bellies.
I remember this day very clearly. Evan wanted to drink the water the whole time. 🙂
But I would be lying if I said it doesn’t put me right back to the baby pool-big sea situation sometimes. I watch Evan do his own thing, happily splashing away, unaware of any development gap or difference. Repeating a string of sayings over and over again. “Here we go!” “All aboard!” “Light on?” I love hearing our little guy talk. It’s just a little different when you have an example of age appropriate speech right in front of you. My friend’s son uses interjections, adjectives, a rich vocabulary. I could listen to him talk for hours. I videotaped him counting a long time ago when I was babysitting him because I found it amazing to hear him count. Evan is using two word combinations, and he only really adds on the word please to make the second word. And who cares, right? Certainly not Evan.
E happily splashes in his baby pool. His smile does not fade when another child expresses his or her need more clearly than him. He does not notice that he is wearing orthotics and still using a wider gait and walking on his tip toes. He does not mind that the children at school are sitting in their chairs without any straps and buckles and he is strapped into a booster seat to sit at the table. He does not catch the second glance the mom in line gives him and me when I say he is 2.5 and he is shouting vowel sounds in the line at Target.
Evan loves the baby pool. He loves when others allow him to enjoy the baby pool. He also loves when you jump in with him. Play with him on his level, see the water through his eyes. When he is allowed to push buttons for a little while. Allowed to shout church hymns at the top of his lungs in the grocery store. (only his mama knows they are actual songs) Allowed to turn on and off the light switch a few times every time you enter the room. Allowed to chase the stroller so he can spin the wheels for a little while.
When I was a little girl, I could spend hours in the baby pool by myself. Splashing around, using my imagination to pretend I was floating in the ocean, that I was a mermaid waiting to be rescued. It’s not a bad place to spend some time. If Evan doesn’t mind it, there is no reason why I should be concerned. Doesn’t mean he won’t still receive swimming lessons or that he will not be asked to try out the deep end at some point. But for now, the baby pool is just right for him.
Splash. Smile. Release.
Scrolling back through pictures of Evan in his first year, my heart hurts a little. It hurts for a number of reasons. It hurts because I can see the features that indicated he had Williams Syndrome. The blue sparkly eyes, the wide and flat nasal bridge. The memory of his floppy limbs. At the time I had no idea. Evan was over a year before we received his diagnosis.
I’m sure some of you are thinking, “what does it matter now?” Truly, it doesn’t. And 92% of time, (I did extensive research to get that percentage) I do not look at the words Williams Syndrome and feel anything negative. In fact, most of the time I see it as a true gift. That my son has this rare condition that causes him to have extreme empathy and compassion. It causes him to smile all day long. It causes him to sing at the top of his long and care very little who hears it. I can drop him off at preschool and there is no crying. He toddles away from me happily and forgets I’m there.
It hurts because I see my father’s rosy cheeks and ear to ear grin in Evan’s chubby baby face.
It hurts because I can remember the difficult time I had post-partum and how I longed to see the beauty in motherhood.
It hurts because I know my little boy is growing up. I know he will enter the public school system soon. That our first meeting with the child study team in our school district is just days away.
Halloween 2012 17 months
It hurts as I recall the first time Evan was evaluated by the early intervention team. How my stomach lurched each time they asked Evan to complete a task and he would just look at them expectantly, hoping they would play with him but not completing the expected task. Not knowing that he was being tested.
Please Touch Museum March 2013
Then the hurt turns to a knot in my stomach. A knot of joy intertwined with struggle, intertwined with pride, intertwined with wonder.
My, how far Evan has come. From this little floppy baby who could stare at a spinning wheel for a half hour straight. From this bouncing bean who loved to leap in his jumper exersaucer. From this eager boy who wanted to communicate with us so badly but could barely get out the word “more” for the longest time.
Our little Jerry Lee 11 months
This past weekend, I woke up late (glorious glorious thing that was) at my in laws house to find everyone else up and playing in their living room. Evan saw me, stopped the game he was playing, smiled a huge smile, came over and sat in my lap. He gazed up at me and just very confidently said, “Mama.” First time ever. Not the first time he said “Mama,” but the first time he spontaneously did so, without anyone pointing at me or prompting him. I can remember months and months ago saying to a friend, “I just can’t wait until he greets me and says my name in excitement.” It happened!!
The following night from his crib he whispered, “Ahhh you,” “Fo-eb-a”which translates to “I love you, forever.”
All on his own.
My Christmas gift has already been unwrapped. And it’s a gift i can unwrap every day. So blessed.
|First Day of School for Evan (27 months) September 2013
Well….I did it. We did it. We made it through week one of Project Return to Work. The last day I taught in a classroom setting was in April of 2011. I was 9 months pregnant and incredibly eager to meet my son and become a mother. I can honestly say I had NO CLUE what the next two years would bring.
None. Zip. Nada.
I didn’t know the excruciating pain of labor.
I didn’t know the extreme joy of holding my first born child after carrying him around for ten months and five days.
I didn’t know the turmoil that sleep deprivation can do to your emotions and your psyche.
|Saying hi from my classroom.
I didn’t know much I would need and love having my mother in law stay with us when I struggled with anxiety and insomnia in the months after giving birth.
I didn’t know that being a mother is not necessarily an inherent skill you are born with. It takes work and experience just like any other job.
I didn’t know that I would miss getting dressed for work in the morning and the adult conversations that go along with having a job outside of the house.
I didn’t know how guilty I would feel for missing those things.
I didn’t know how much guilt stinks.
I didn’t know how being a SAHM sometimes feels like high school all over again, with the mommy cliques and the comparison conversations that go on at the playground and indoor play facilities.
I didn’t know how much richer my relationship with my mother would be through becoming a mother myself.
I didn’t know how important it would be to make sure to have a child free conversation with Todd every day.
I didn’t know how hard it would be to leave Evan with a babysitter. We still have not “hired” someone outside of our circle of family members and friends.
I didn’t know how exhilarating it would be to have a baby free dinner with Todd.
I didn’t know we would find out our child has a rare genetic condition.
I didn’t know how life changing a moment in a doctor’s office could be.
I didn’t know how hard it would be to be around my friend’s children for a while.
I didn’t know how desperately I would try to find a reason to believe the doctor might be wrong.
I didn’t know that one day I would realize my child was going to change people’s lives. For the better.
I didn’t know how music would bring so much joy to our child.
I didn’t know that I would end up taking an additional year off and have no regrets.
I didn’t know how I would go from wanting to work, to not wanting to work, to needing to go back to work and all the emotions that go along with it.
I didn’t know the power of online communities.
I didn’t know I would make lifelong friends on a support board.
I didn’t know I would wear a Williams Syndrome awareness tee shirt to the store and hope that someone would ask me about it.
I didn’t know how the half hour after nap time would become my most favorite time with Evan.
I didn’t know how important early intervention is.
I didn’t know how much I would value Evan’s therapists.
I didn’t know how hard it would be miss some of Evan’s therapy sessions because of work.
Again, I didn’t know how much guilt can really stink.
I didn’t know how hard working moms work.
I didn’t know how hard stay at home moms work.
I didn’t know conflicted I would feel about being both of those things.
I didn’t know how hard it would be to give up the amount of control I have over Evan’s life.
I didn’t realize how much I value being in control.
I didn’t know how two big blue eyes could just fill up my heart and tear up my insides all at the same time.
I didn’t realize how blessed I was, and would continue to be.
(that is what my elementary school gym teacher Ms. Atwell would call us, it’s catchy, right?)
I thought it was a good time to share some of my favorite blog entries that I have read over the past month or two. I have become engrossed in the blog world and I have learned so much from other bloggers. It seems fitting that every few months I share what I have found amusing, educational, touching, you name it.
Enjoy! Be sure to leave supportive comments on the blogs and tell them I sent ya!
1.) Love That Max: Getting Sucked into Special Needs Parent Self Pity
I just love Ellen, the author of this blog. She writes with humor, honesty, and a lot of very helpful knowledge. This particular entry reminded me that we are all human, and it’s okay to have pity pot moments, but we just have to make sure not to stay there.
2.) Star in her Eyes: You’d Never Know.
This eloquent blogger has two beautiful daughers. One has a rare condition called Wolf-Hirschhorn Syndrome. She blogs about life with her first daughter and beyond. This entry really hits home for me, she discusses the way that people often address her after finding out that Fiona has a genetic condition. That she “looks normal.” Such a harmless phrase, but it can mean something very different to a mama of a child with special needs.
3.) Andrew Solomon’s Ted Talk
: This is not a blog per se, but a 20 min talk that hit me so hard. Just really made me think about acceptance, differences, prejudice, how I treat and look at others. Do yourself a favor and carve out some time to watch it.
4.) Brewing And Chewing: Big Brother Motives.
The husbo wrote a really great piece that somehow ties together the reality T.V. show, Big Brother, the 2004 Indian Ocean tsunami, and Williams Syndrome. He truly has a brilliant mind, that is not just the wife speaking.
5.) Williams Syndrome Smile: In Love
. This is written by a friend of mine. Her daughter has WS and had major heart surgery in May. This entry just makes my heart full, as she discusses her love for her daughter and how it has changed into something amazing.
|Relaxing after class (and a rainy morning)
Mama, I got this.
That is what Evan seemed to be saying as he walked away from me this morning at his first “Meet and Play” class. I have been calling this class, ‘Preschool Prep.’ I had to do a little mommy maneuvering and negotiating to get him into the program. He is only able to go for three weeks but I was excited to get him into any amount I could. It is a small group class with several teachers and therapists. Parents leave and can watch through a two-way mirror. They do a mini-schedule with the children- with gross motor activities, art, music, snack, etc. I thought it would be a perfect setting to see how Evan might do this fall.
It’s no secret, I am a teensy bit nervous about this fall.
Evan will spend part of his week in a daycare/preschool setting and a few days with my mother, while I return to work for the first time in over two years.
Believe me, I know how lucky I am.
You do not have to tell me twice. I am so lucky to have had this time at home. I am lucky to have a wonderful job to return to where the staff is like family. I am lucky that my mother is able to help out a few times a week to offset costs and to give Evan a mix of socialization and one-on-one time. I am lucky that I found a school for E where I am close friends with a staff member and I felt at “home” the minute I walked through the doors.
But being lucky, and being blessed- does not make me any less uneasy about those first few weeks when we will all be going through a major transition.
Mama, I got this.
Every time I look at Evan lately, he is doing something new and exciting. Eating a meatball, walking all over without any support, opening doors himself, Identifying animals in books with no prompting, telling Zoey to “iiiii-ooooowwwwwnn” (lie down)
It seems he knows I am nervous. He knows I am worried how he will “fit in” with the other children. How will they treat him? How will the teachers handle his need for repetition? His bouncing and rocking? His unusual diet. He is attending school with children who are developing typically. If there are other children with special needs enrolled, I am unaware of it. They will be sitting at a table to eat, washing hands at a sink, using a cubby for their belongings (yes I said belongings), creating art projects, doing circle time, the list goes on.
Relax, mama, I’ll be fine.
This morning, he sat at a table and did a puzzle. He ate a snack with the other kids and didn’t run away. He sat in a music circle (albeit in a teacher’s lap) and did not try to get away. He carried two rubber stars across the room so someone would sing “Twinkle, Twinkle,” to him. He played with watermelon that they had for snack and did not gag or throw up.
He only cried because others were crying. (story for another day)
My little Mr. Empathy.
I walked out of there beaming from ear to ear. I was so proud of him.
Mama, I am going to be fine. Believe in me.
And I will be there waiting at the end of the day to give you a big hug and a smile, I promise.
Trust me, Mama.
What would I do for my son in a heartbeat?
I would jump in front of a car. I would plunge into deep water. I would give him water, drink, shelter before I would give it to myself.
I would take him to numerous doctor’s appointments. I would check on him every night, putting my hand on his back gently, just to make sure he was breathing easily.
I would go home early from events to make sure he gets to bed at a reasonable hour. I would wear sweet potato and Pediasure stains on my shirt like a badge of honor.
I would hold up an Octopus and make him sing and talk 23 times in a row, because Evan is using his way of communicating to request that.
I would stand behind him on every piece of playground equipment because he just isn’t ready to be on them independently yet.
I would listen to him bounce in his crib so hard that it shakes the floor boards. I would spend his “nap” time watching him do raspberries, shout and bounce in our video monitor.
I would put pieces of french toast onto his high chair tray, one at a time, so that he has the chance to demonstrate good oral motor skills while eating, even if it means a meal takes about an hour at a time.
Do you know what I would not do in a heartbeat?
This shocked even me.
To be honest, I probably would have, if you had asked me a year ago. I was still so angry that my child was going to face extra obstacles for the rest of his life. I was angry that even though I love my students with special needs (and always have), I did not sign up to have one at home.
But, time changes a LOT.
I have talked to other mothers about this topic. And some disagree. Some admit they would take away the disability in a heartbeat.
I completely respect and understand that.
It pains me to imagine Evan being bullied. To imagine him sitting in a classroom, trying to do the appropriate thing, but struggling to figure it out. It is hard to have him play with his age appropriate peers and watch them speak with ease to each other while Evan bounces and holds onto a chair, excited to communicate with them but unable to in a clear fashion.
I am sure you have heard about the scientific advances in chromosomal therapy in regards to Downs Syndrome. Here is an article that sums it up. It is a very tough issue to consider. I can totally see both sides of the issue.
But for me, when I think of Evan, and I think of the completely fictional idea (for now) that something could be done to “correct” his genetic condition, I would not want to do that.
Evan is who he is, and part of what makes him Evan is his genetic code. I would not want to change that for the world. He stared at me today for about 12 minutes straight while I sang three rounds of a church hymn that he loves. He would not take his eyes off of me. His little soul is just so beautiful and I know that if he were to have the missing genetic material, he would not be the Evan we have grown to love so much.
Just like if you were to take away the genetic information that makes me overly sensitive, prone to gain weight easily, and clumsy as all get out- I would not be Erin. I just wouldn’t.
Clearly this is just my opinion, my experience, my son.
There is much I would do for Evan. Much. But in a heartbeat,
I would not change who he is.
If you would like to sing along with this entry’s title, please watch this. I probably sing a version of that song about 20 times a day. No, I am not exaggerating. Music is the cure for everything when it comes to Evan.
So since posting the walking video at the park last week– we took a vacation to Vermont and are now home safe. I expected that Evan would be toddling all over Stowe. Alas, he continued to prefer crawling and even with prompting, did not do much independent walking.
Then this happened on Monday:
Our awesome physical therapist takes us to the Children’s Discovery Museum in Cherry Hill occasionally and she works with Evan using the exhibits and equipment. Clearly, it is highly motivating for him as you can see in the video. Since Monday when he took off walking all over the museum, he has been attempting it more and more. He needs a reminder now and then to stand up, because I think he is just so used to immediately dropping down to crawl that he forgets. It is so exciting to see him taking risk after risk and trying so hard to stay upright as long as he can.
Then today rolls around and he eats almost two whole pieces of french toast, I started having him use a step stool to wash his hands, and he helped me “clean up” some of his toys. Big boy! He also has begun testing limits big time. He has known the meaning of the word “no” for quite some time. He doesn’t always listen to it, but he does take a moment to process it and it gives me a second to intervene. Today he started to do things he knows he is not supposed to, for example, pulling my earring out, or grabbing remote controls. He starts to do the forbidden activity and then looks over at me and says “ohh? ohhh?” Basically prompting me to say no. So I do, and then he tries again.
Tonight this happened approximately five times in a row.
After he skipped his nap.
Suffice it to say, I was pretty frustrated. I tried to be “Super Nanny” and repeatedly remove him from the situation, and be as calm as I could be. It took a lot of deep breaths.
It was one of those nights where I was counting down the moments until E’s bedtime so I could have some time to myself. Then I started our bedtime routine. I wrapped him like a burrito in his weighted blanket, we fed the fish, and sat down to sing some songs in the nursery rocker. He has been really into “You are my Sunshine,” lately so I started singing that. He cozied up in my lap, leaned his head against my chest and looked up at me with those sparkly eyes. It was very apparent that he was content. Content to simply be in my lap, listening to a song he loves.
I know he was displaying typical toddler behavior when he was seeking to hear “no” over and over.
I was actually kind of thrilled.
That is one of the funny parts of being a mama to a child with special needs.
You rejoice when they throw “typical” tantrums.
You rejoice when they eat french toast without gagging. Almost two WHOLE pieces of toast!
You rejoice when they move their fingers together at the right times during “Itsy Bitsy Spider.”
But the way I felt holding him in the rocker tonight, that wasn’t unique to special needs mamas.
That was just good old fashioned mama love.
Written on August 29th, 2012 for a feature on the awesome Pickled Bean.
We had spent about 4 months of dealing with up and down digestive issues with Evan that had affected his growth and concerned our pediatrician. He displayed aversion to food with any type of texture other than watery puree and could vomit up to 5 times a day, without any real pattern. Three days after Evan’s first birthday (May 30th) we went to a geneticist at the Children’s Hospital of Philadelphia and were told that our son has Williams Syndrome.
In a word, we were blindsided. We had no idea that the issues we had been facing for the past 4 or 5 months of our little guy’s life were due to a genetic condition. I had been assuming all along that he had issues in his esophageal tract or that he might have some slight sensory issue but nothing major. He did not have the typical early detection of serious heart issues, in fact when it came up that we “might want look into genetic testing” as the pediatrician on the feeding team said in late May- the doctor even said she was 90% sure nothing would come of looking into it. Probably not the best thing to tell a parent. But she changed our lives that day in that little, cramped, stark white office. She questioned whether it had ever occurred to us that our son does not share our facial features. I literally felt like the wind had been knocked out of me. My father passed away a few months before we found out I was pregnant with Evan, and our son is a mini Bobby G, my Dad. He has the same droopy cheeks and big huge smile and personality. And I have clung to that fact very tightly. So hearing the doctor suggest that he does not look like us hurt more than she could know. A day later- she gave us the term, Williams Syndrome- which neither of us had heard of. I have been in special education for over 11 years and I have never encountered a student with this condition, nor had I read about it. So of course, after shakily entering the term into my keyboard and coming to the WSA page, my heart just sank. I remember not being able to focus on the information as a whole, I only could see certain words popping out at me, like, “low IQ, 75% have mental retardation, have successful jobs as greeters at grocery stores, need one-on-one aides, etc.”
I remember collapsing into the recliner and calling my husband crying. Somehow he had already found the term online when typing in some of the issues we had run into and things that came up at the feeding clinic appointment. Both of us had trouble having the conversation and I just said that I thought his life expectancy was not different than a typically developing child. I hung up the phone and went up to Evan’s nursery and picked him up out of the crib where he had been fighting a nap for a little while. I held him and rocked him the recliner, which I had not done in quite some time because he doesn’t wake up over night much anymore.
And I lost my s***.
I am not one to curse unnecessarily and I apologize for that, but I did. Plain and simple. I started wailing and could not stop. And the funniest thing happened (which now is so incredibly symbolic), Evan picked his head up off my shoulder and looked at me and started giggling uncontrollably. He thought my wailing like a banshee was laughter. And he thought it was was the perfect time to laugh right back! So he kept laughing and sucking in air and squealing. Of course I immediately smiled and felt my heart start to lift.
15 months in OBX
and that infectious laughter –
is really at the heart of our new story with our son. He is fine. He has a few less genes than the average child his age which makes him less likely to walk before 2, or be in a regular education class without assistance, or love to eat chicken nuggets and grilled cheese right now like his little toddler friends. But those missing genes have done nothing to his HUGE personality. He is
and just so very loving.
He has already taught us so much in 15 months, and I know he will continue to for as long as we are blessed to walk this earth alongside him. If I am being honest, (which I know I appreciate), of course I am still scared. Yes, I get angry sometimes when I think of how his future might be affected by WS. But the thing both my husband and I keep trying to remember is that we are far more worried about how his future looks to US. We are concerned over how his life is going to be different from what WE want for him. He is pretty darn happy with how things are going for him right now. Eating his sweet potatoes, chasing our choc lab mix around the house, climbing up the steps over and over no matter how winded it is making Mommy. I do wish people would stop saying they were sorry to hear about Evan’s diagnosis. This isn’t a sympathy card worthy circumstance in my book. I know when there is difficulty finding the right words to say, “I’m sorry,” might pop out.
But please know, it’s really okay. We know there aren’t any magic words you can say that is going to make it all better. Because we don’t need it to be all better- Evan is our son, he is our reality, and although we didn’t expect it to include a genetic syndrome, it is okay that it does.
So many very deserving, amazing people cannot have children or lose their children at a a young age. I had a miscarriage before Evan, I know how devastating that is.
Evan is here, in our lives,and as I keep repeating, he is more than okay, he is a rock star.
And that is not me just blowing sunshine. That is me being a proud mama.
I am so thankful for the community of parents I have “met” online and I truly wish I lived closer to everyone so we could all hang out and celebrate our awesome kids.
I also want to say thank you to our family and friends who are truly amazing. They lift us up with words, laughter, glasses of wine and beer, tears shed, and just by loving us. Thank you to all of you.