Archive of ‘musings’ category
“He’s 6 years old, he should be able to walk the block without complaining or flopping.”
“Trick-or-treating should be fun, not stressful.”
“We should be able to walk through Target together and not have to put him in a too-small cart so he doesn’t get away from us”
“Field trips should be such a fun day away from school….”
These thoughts either go through my mind or they cross my lips far too often. Combine our lack of child rearing experience (prior to E), our expectations, our own childhood experiences, and our observations of other children of similar age to Evan. Mix them all together and then line them up against who Evan is…..and how he is wired.
At a town wide Halloween festival. This was the extent of his happiness.
Evan loves to socialize. He loves to say hello and get a response out of strangers and loved ones alike. But…he likes to do that on his own time and on his own terms. So we find ourselves planning an outing- where people familiar to Evan are going to be present. We think, he is going to love this, he loves ____________ (enter name here). We tell Evan about this excursion before we leave. He asks with anticipatory anxiety, over and over, if we can leave, if we can go to the exciting place.
We get to said place, and things will change rapidly. Evan will get a dazed look on his face, and he will push past the familiar people who are so eager to interact with him. He will exhaust every corner of the house, yard, etc- looking for the toys he loves. Or looking for things that make noise, music, anything of that nature. The content, giggly boy that we left the house with is now very reserved, and even agitated. I might suggest to him to go to a room where his favorite snack is, and he pushes my hands away in a huff. He might even drop to the floor.
Then he looks up at me with those sparking blue eyes and says, “Sorry mommy. I’m sorry mommy.”
I know your heart just broke. Mine often does too. But he does say “I’m sorry” for many different reasons and emotions. It is a go-to phrase for him right now when he feels any type of discomfort or confusion.
But in those moments, it feels like he is saying,
“I’m sorry mommy. I’m sorry that I disappointed you. This is not what I expected either.”
He wanted to roam the house freely without abandon. He wanted to talk to people on his own terms, not when they wanted to talk to him. Social cues are foreign to him. Even when explicitly taught, it is tough for him to remember that you walk into someone’s house and greet the host before walking further. Evan often will make a beeline right for the bedrooms. Which of course is quite rude and not appropriate.
But to E- it is the gold mine of fun! Fans, alarm clocks, remotes, you name it.
The past few months have felt very hard but very necessary in my journey as Evan’s mama. I have picked him up off the ground more times than I would like to admit. I have been smacked, ignored, and I have been hugged harder than I have been our whole relationship. I have waited him out for 30 min + when he has refused to do something I asked.
We are closer than we have ever been.
I think this is due to several things.
A huge factor is my dear husband’s involvement. We are a team when it comes to doing what is best for Evan. The summer proved to be one of the toughest for me in all my 39 years. Evan went through a medicine change for his seizures and with that came a language increase but also a huge behavioral increase. Melody is a spirited, amazing, pain in my rear most days. Handling Evan’s struggles were tough when she was screaming that I gave her the wrong color plate. Todd made sure to give me ample opportunities to get out of the house when I needed to. He didn’t get upset or try to fix it when I cried. He was just there. When things kicked up again during the start of the school year- he came to me and said he felt like we needed to be firm and consistent with Evan but we needed to be as positive as possible. Keep things light, avoid getting into a battle with Evan, because the negative is as reinforcing to him as the positive. Actually, it is probably MORE reinforcing. Unfortunately.
One of the biggest shifts for me, has been my understanding of Evan. It grows deeper every day. I am trying really hard to put myself in his shoes. I am swallowing my pride more, and not feeling crappy about it. It is okay to say no to a birthday party because I know it will be super stressful for both of us. Even if that means he misses that peer opportunity. Even if that is one more playdate that won’t be scheduled. The strain that it causes him, and our relationship is not worth it to me.
It is also okay to take risks. Try walking through a grocery store with E without a cart. Try going to a friend’s house that has the motherlode of Fisher Price toys.
Our expectations might not always jive. Our experiences are going to be completely different.
But it is about trying to meet him where he is. While also giving myself a break for not always finding that easy.
Yup, I’ll work on that this week…and next.
And for the rest of my time as Evan’s mama.
Lying in bed with Evan tonight- (for the first time in a long time because of my injuries), I found myself feeling guilty. I kept trying to engage Evan in conversation.
M- “I heard you were practicing for kindergarten graduation. That is so exciting.”
E-“Hi, mommy! How are you? How are you? How are you?”
M-“You get to go up on stage and sing songs. I wonder what songs you get to sing.”
(using declarative sentences instead of constantly questioning him is hard work, but it has come more naturally with time)
E-“V Tech alphabet train, the chug a lug song!”
M-“Hmmm….I don’t know that song, where did you see the alphabet train?
E-“V Tech, V Tech. Hi mommy! How are you?”
This is where the guilt crept in. The guilt because I was feeling dejected. Dejected that I couldn’t get Evan to have a reciprocal conversation with me. Just yesterday I had a conversation with Melody that lasted about 6 or so exchanges before she tired of me.
And what did I feel? a hint of guilt…because I wish I could talk to Evan that way.
I wish he would WANT to talk to me that way.
But maybe he does.
Or maybe more accurately, maybe he is.
He is talking to me the way he needs and wants to. It just doesn’t fit my communication mold.
Right before I got up to let him go to sleep, I started singing,
“Lullaby, and good night.. little Evan….”
The next line as you know is “sleep tightttt”
Evan interjected, “wake uppppppp” and he sat up.
My guilt turned into a wave of warmth.
This kid. Just when I think he isn’t paying one bit of attention to me. He changes the lyrics in the song to communicate to me that “No mommy, I do not want to go to bed right now, stop trying to distract me.”
I am constantly telling people that there is much more than meets the eye with Evan. Sometimes I just need a little kick in the pants to remember that myself.
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.
Hey Mom, you can be proud of both of us!
I know I have said it about 25 different times in my blogging lifetime. (okay maybe 250 times….)
But the way in which Evan hears music is not like the way I hear music. And I am an incredibly sensitive, emotional person. A canary, as Glennon Melton likes to call us.
But Evan hears music in his soul. In his heart. Not just with his ears. In fact his ears are probably the last place that hears the music.
When he was a young toddler, I noticed that when I would play hymns for him, he would become entranced. The more climactic the song, the better. Sometimes he would squeal for more. Sometimes he would sob at the end. Possibly because it was ending, possibly because the song swelled and his little sensitive heart couldn’t take it.. I’ll never know exactly.
Here he is at age 2 watching Carrie Underwood and Vince Gill sing “How Great Thou Art.” You’ll notice the legs kicking, the excited rolling of his arms, and the stare when he realizes the song is almost over.
About three months later, here he is following a hippotherapy session singing in the back seat. A child who was barely saying single words clearly, was able to sing the chorus to a hymn. (excuse the darkness, you can hear him clear as day)
And finally, I played him the same video with Carrie U and Vince Gill today. I had to splice together a few bits and pieces of his listening experience. We had Spotify on the TV so he just had the album cover and title on the screen.
The video caught it off at the end, but Evan looks at me with his glistening, teary eyes, and said, “How Great Thou Art again?”
I just wish for one minute I could be inside his complex mind and see what he is seeing and feeling.
“Then sings my soul….”
I pray she will continue to be fierce.
So far, our Melody has been sassy, strong, outspoken, happy, did I mention strong?
Two years ago today, I posted this.
My world was broken. My heart was sore. My soul felt very depleted. I was sure that our chances of having a sibling for Evan were extremely slim if not gone.
Over time I came to accept that, and embrace the family of three that we had become. But there was always a little voice inside that whispered, “a sibling would be so good. for everyone.”
Fast forward to the present. We have a thriving almost seven month old little lady. She makes her presence known and her development is one of the most amazing things I have ever witnessed. Because of how hard Evan had to fight for each milestone, it just blows me away how rapidly things are happening for Melody. I am torn on a daily basis between shouting how excited I am from the rooftops, or feeling compelled to compare this experience with Evan’s first year with each new developmental leap she makes. I am so glad we had our children in the order we did. Evan’s experience was completely his and his alone. I had nothing to compare it to, so I didn’t feel the delays as heavily as I might have, if he had an older sibling.
I felt my eyes sting with tears the other night. I was reflecting on how I prayed nightly while pregnant with Melody. I prayed that Evan’s sister would fiercely love and defend him. That he would be her hero and they would be good for each other.
Even though she now takes things away from him and she loves to yank his hair, you can see adoration in her eyes. I hold her up to look at his school picture before he gets home from school and she giggles and kicks her legs all around in excitement.
Melody has her whole life ahead to decide who she is, and who she wants to become . But for now, I will revel in their relationship.
Baby girl….I’m ready to meet you.
39 weeks tomorrow. I woke up today with a weird sort of peace and calm. And that has been hard to find in the last month or so. With the heat of the summer, daily bouts of contractions, Evan’s CHOP overnight stay, some potty training regression, anxieties about the baby/transitional period to come- it has just been a different last 5 weeks than it was before Evan was born. I think back to that last month before his birth (where I took entirely too long of a maternity leave before he was born) I took long walks each day, bounced on my yoga ball, wrote my unborn baby letters, I read baby blogs at length, and just was so wide eyed and excited in general. I didn’t have a lot of false labor, and the weather was kind to me. I just re-read this blog I wrote the night before Evan was born, 5-26-2011, and I smiled at my naivete.
I also re-read this entry that I wrote to all the different mamas that I have been in the last 4 years. Dear Mama
Phew. No wonder I am feeling so differently this time. It has been a wild ride the last five years since we lost my Dad and found out we were pregnant with a future Evan.
This guy made me a mama….
One thing that I do not handle well is uncertainty. It’s not in my DNA to find peace in the unknown, or to accept that I do not have control over everything. But….I have been working REALLY hard at it for a long time. Just because it is hard for me, doesn’t mean I can’t try. So this morning, I wake up, feeling a little more at peace, and very very VERY ready to meet this little girl. I also am striving to find acceptance of the unknown. Not knowing who she will be. Not knowing if she will also have special needs or developmental delays, or the like. Not knowing if the labor will last 2 days, 2 hours, or 30 min. Will she love her brother with all her heart? Will Evan be able to break away from his toys and music to love her right back? Can I sit in the quiet moments with this little girl and breathe deep knowing that no matter what happens…..It WILL be okay.
Because when I read back to Evan’s diagnosis story. I remember those fears, those questions, those unknowns that were suffocating, blanketing, all encompassing. And I sit here, over three years later, with another child in my belly- and it HAS been okay. Evan is potty trained (going through a little regression but we’re on it), he’s going to school full time, he is loved by classmates and teachers alike, he runs up to me when he sees me after a day of school saying mommy, mommy! He is starting to read sight words, climbing into his car seat himself, finally spitting after he brushes his teeth! And we are about to have another child after sending two babies to Heaven.
I still don’t know what will come in the next day, week, year, decade. And that is not easy for me. I’d love it if God would just send me a little date planner and let me know when each milestone will happen, when she’ll sleep through the night, when Todd and I can go out on a date again (where I don’t feel like I am going to fall asleep after two min), when Evan will be invited on his first official school playdate…….
But that’s not how it works.
Instead we all plow through our days and lives doing the best we can as things happen. The amazing, the excruciating, the beautiful, and the mundane.
I AM getting better at all of those. And I won’t quit until I’m no longer on this planet. Because this is all worth it.
Can’t wait to add a new one with Baby Sister. Stay tuned!
I think if I was a little more tech savvy, I could search my past blog posts and find the ones where I have quoted one of my closest friends, Talia, when she says, “You need to slow your roll!” I can remember her using that phrase back when we started teaching together 10+ years ago.
She is very right.
I do need to slow my roll.
This guy deserves that. He deserves much more of course but at the very least he deserves a mama who can practice what she preaches. I often use the phrase, “Presume Competence.” and I relate it to Evan and his ability to rise to the occasion when you give him the chance.
So why is it so hard for me to remember that myself?
In the past few months, he has started drinking out of an open cup.
He has moved into his big boy room.
Evan bouncing on his bed with his Uncle Joe
And he is potty trained.
Yes, I sure did say that.
Potty trained. (and I’m choosing not put underwear pictures, because I already take a huge risk putting his pictures out there, but I don’t want to go that far…)
My proud big boy
Ok…so he is not fully potty trained. We are not night training right now and probably won’t for a little while. But he is WAY further along in the process than I ever would have imagined. We implemented the popular three day potty training method (a loose version) a little over a week ago. It was hard. HARD. Three of the hardest days I have had in a long time. But…..fast forward a week. He has had only a handful of accidents. None at school, and he has gone several days in a row without any. After being in diapers only for for four years. The biggest accomplishment was staying dry through a very stressful CHOP (Children’s Hospital of PA) visit this past week. I totally planned to put a pull-up on him before he went through some testing and a very nerve wracking doctor’s visit, but he initiated potty trips while we were there, so I decided to PRESUME COMPETENCE gosh darn it and let him wear his big boy underwear and surprise me.
And of course he did.
This time last week I was sitting at home writing an email to Evan’s ESY teachers preparing them for the possibility of accidents, and letting them know how the weekend had went. I sent in multiple pairs of underwear, extra clothes, the works. Fully expecting that he would come home in a different outfit. I was a little bit of a nervous wreck all Monday morning. Messaging my WS mama friends asking them if it was too much to expect. Could he make it through a few hours at school without an accident? and maybe I was expecting too much too fast…
Fast forward to Thursday, after four days of school. Every day his very kind and accommodating teacher (who knows I am a mama that needs reassurance) would email me a little update saying, “Yay! No accidents, and a bm on the potty!!!”
That is basically Evan’s way of saying, “Mom, seriously….slow your roll. I’m not perfect, as we have already discussed, but I am trying my hardest. Let me try.”
Deep breath….I will buddy, I promise. I owe you that. xoxo
Phew. Our kids really teach us some tough lessons right when we need them to, don’t they? In an effort to blog and share a little more often before Baby Sister comes, I thought I’d share this quick story. Lately I have been struggling with patience, especially with our dog and our son. This is not a new struggle for a parent, I know this. Especially with a four year old. Especially with pregnancy hormones. Especially with a four year old who does not really realize/understand/care that I am supposed to have some authority over his life. Sigh…
Especially because I am hot, uncomfortable and not at my best. (I’d insert a picture here, but who wants to see that?)
We have been trying to find strategies, techniques, direction, anything to help us with teaching Evan right from wrong, especially when it comes to our dog. He has been overly aggressive with her and for some reason even though I know in my heart that she is not really hurt, and Evan does not really understand what he is doing- it GETS TO ME very badly. Like nails on the chalkboard badly. Like lemon in a paper cut badly.
I guess everyone has their things that get to them. Traffic, dirty floors, lateness….
Evan smacking the dog. This is mine. For this week.
So the other day there was a swirl of rough things that occurred in a short amount of time. We were probably late for something (not new), the dog was anxious because she could sense that we were preparing to leave the house. Evan has decided it is super fun to not want to wash his hands, get dressed, come to the car, you name it, he decides on a daily basis what he is not going to do that day. At that moment he was avoiding one or more of those things. The dog started barking at something outside, Evan smacked her and I lost it. I yelled and I think I scared all three of us. I am not really a yeller by nature and lately it has come to my attention that maybe I could become one if I am not careful.
After all three of us cried, well at least two of us. (not Zoey) Evan started marching around the room.
He bounces back rather quickly.
This is what he sang.
“We’re not perfect….no we’re not. We’re not perfect. But we’ve got what we’ve got. We do our very best, we do our very best, we do our very best each day. Cause we’re not perfect……but you know that I love you that way.”
Yup. a beloved Laurie Berkner song that we have been singing a lot lately. (he really over articulates the t’s.)
And he sang it right when we all needed to hear it.
Nope, Evan, we’re not. And I’m going to keep working hard to be patient and you are going to keep working hard to be the best Evan you can be. And Zoey, well she will benefit from both of us doing that.
We’re not perfect, but we do our very best each day. (at least we try.)
This face helps me to keep trying…
Hello my lovely, supportive, and probably bored readers. I am very sorry that I have not been the diligent writer that I was last year. I can give you numerous excuses but the biggest being that I have been falling asleep before 9 many nights and that was my prime writing time. I do want to write a separate post about this, but the big news is that our household will be expanding to 4 in September.
I’m currently 18 weeks and doing very well. Another time I will try to write about how different this pregnancy is, given our history and given we have this ball of boundless energy to contend with this time around:
Watch out! (Evan almost 4)
What I wanted to address in this post is this scenario, that I truly believe sums up most days of my life.
Have you ever entered a grocery store, thinking, okay…all I have to get are tortilla chips and salsa, so I will just grab a hand held basket and run to that aisle. Then you find yourself remembering you need milk, canned beans, and some produce that you ran out of? So you think, I can fit that in my handheld basket, no problem. It’s not that long of a trip around the store. But by the time you get to the register, your forearm is bruised from how heavy your basket is. And you think, jeez if I had just taken the time to get the bigger cart……
If that has never happened to you, then maybe this won’t make as much sense to you. But I have done that NUMEROUS times, especially when I was single and living alone. I always had the mindset that it would be silly for me to push around this big cart when I was only shopping for myself. And I almost always regretted that ridiculous assumption….
The larger picture is that this habit of putting too much into a small basket is a problem that I face with my life’s daily activities. (I apologize to my close friends who I have already shared this with) I often will look at my calendar and think, sure! We can fit in a hippotherapy session
A little snow doesn’t stop hippotherapy!
two hours before a baptism party that is 45 minutes away. I can squeeze in a hair appointment and make it home to relieve my mom by the time I promised. (and I walk in 30 min late, every stinking time) I’ll think, Evan really deserves some outside time with me, I can fit in a walk with a playground run before I make dinner (and after working 7 hours)
Nine times out of ten, I find myself at the end of one of these too small basket days, feeling very harried, very disappointed in how the activities panned out, and just plain exhausted. My husband and I both like to travel, hike, take day trips, etc but we will plan a weekend where there isn’t one moment free and at the end we’ll feel like we need a weekend to decompress from our weekend.
Sometimes I thrive on this activity, the busyness can be exhilarating, and just what I need. Other times (and more often these days), when too many things are scheduled in a day, the actual activities will never live up to the expectation surrounding them because they just plain can’t! Because we are too tired to enjoy them or because we are busy getting stressed thinking of preparing for the next place we have to be.
Today found both little E and I feeling very under the weather. I think I have a pretty bad sinus infection and he has the beginnings of a head cold or the same thing. Of course being pregnant, the only real remedies available are the neti pot, humidifier and rest.
We were supposed to attend a family celebration this afternoon and my very wise husband talked me out of it, saying, you don’t feel well right? And Evan doesn’t feel well right?…..and the logic was too clear for me to argue. Even though the guilt monster crept in as it typically does.
This afternoon Evan (who you know has not taken a proper nap since he was 2) slept for almost 4 hours.
I slept for two, and then read a fluffy novel that had nothing to do with work , therapy, how to be a better parent, etc. It was just to pass the time and help me to stay still.
I chose the bigger cart this afternoon, and I am much better for it. I think my boys are too. I just need to learn to do this when I do not have a stuffy nose causing me to make the decision. :-/
There are some odd things we do as parents of littles with special needs. I guess they aren’t odd to us, but they might be to others.
Imagine big heaving breaths with this face. Repeat.
One of those things that I find myself doing lately is celebrating the typical. Specifically, celebrating when my son (who is 3.5 and has Williams Syndrome) has an all out, house shaking tantrum. Now let me preface this by saying, I do not “enjoy” his tantrums. I get just as frustrated as the next mama who doesn’t like to a. see her child cry, and b. wants him to get his act together and realize the world is not ending because he is putting pants on.
I celebrate that he is being a three year old. That he is expressing his frustration over whatever is bugging him at that moment. Lately it has been wearing clothing. He acts as though you are putting acid covered knives on him when you get him dressed. Have you seen this? It is pretty darn accurate. Albeit slightly creepy but so accurate nonetheless.
Another tantrum he likes to throw is The-I-Want-Dinner/Breakfast/Snack-Now tantrum. I get home from work, and he meets me at the playroom door and his arms go up lovingly and the first thing he says is, “Dinner?” (at 4:45 pm mind you…..) And then sometimes for the next 45 minutes as I try to unpack from the day, and get dinner ready, he will climb into his chair in the dining room and whine and cry for dinner that is taking way too long for his liking.
Yes, my shoulders might tense up in frustration because I wish he would just understand that things take time, and that mommy can’t have everything he wants for him immediately…
I realize, my son is doing something that most toddler-preschoolers do. Not because he has a genetic condition. Not because he can’t express himself otherwise due to language delays.
Just because he is young, and because that is what they do from time to time.
And sometimes, it is nice to experience things that happen just because. They do not happen because of a label, a diagnosis, or a delay.
I hate pants.
I better go prepare myself, time to get him dressed. Wish me luck.