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.
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.
This weekend we took Evan for his hippotherapy evaluation. Yes, that means exactly what you think, he is going to do therapeutic activities on a hippo. Just kidding…..Or maybe you are thinking he is going to be hypnotized, ala hypnotherapy. Neither is correct, but don’t feel bad if you aren’t familiar with the term either.
Hippos is the English translation of the word horsein Greek. Thus, hippotherapy is the use of a horse in occupational, speech, and/physical therapy. (I did not know the etymology of the word until I started doing this blog entry)
Not sure about this horse stuff, Mama.
Of everything we have tried, this was one therapy that I was super excited for, but I also had no clue how it would go, or how effective it would truly be. I knew Evan would enjoy being around horses and spending time with adults and young people at the farm. I also have a love of horses and I have ridden horses several times in my life. But I had a hard time imagining him doing well on a horse, and I wondered how exactly it would help him to progress. When he wasn’t walking- not all that long ago!, both his physical therapist and Dr. Mervis, the researcher we see in Kentucky, suggested that we look into hippotherapy. Dr. M’s exact words were, “Get him on a horse.” She felt it would help strengthen his core., which in turn would help with his language development and walking. I started looking into it last spring. I found a lot of local places that did recreational horse therapy, but not hippotherapy. Apparently they are similar but it is harder to get insurance coverage with the former because it is not done by a licensed therapist. I called around, asked questions, looked into our insurance and decided it would make sense to wait until the fall when we were back on my insurance, which has better coverage overall.
And then as luck would have it, one of my new warrior mama friends (who I practically cyber stalked-a story for another day) suggested this horse farm. She had taken her daughter here for hippotherapy and raved about it. She also was very happy with the support the therapist gave her as far as getting insurance to acknowledge the therapy and get most of it covered. Sounded like a win-win situation to me! So off we went to do a barn tour and then an evaluation was scheduled.
We set off to Brandywine Occupational Therapy and the wonderful Miss Lauren. My mother went with me, which was very helpful. The occupational therapist asked a lot of questions and it was nice to have a second pair of hands to keep Evan close by while we were having him climb on the playground equipment and walk around. Her extensive knowledge in the area of occupational therapy is evident and it made me feel very at ease to know Evan was in good, professional, educated hands at this facility. She used technical terminology and offered reasons for things that Evan does, while also giving praise for different things he has recently started to do. It’s always heartening to know your child’s therapist really knows her stuff. And Evan’s really do.
At first, I was worried Evan was not going to dig the horse experience. He started this low whine when they put his helmet on, and he kept looking around like he wanted to anywhere else but at this farm. Then they had him use a mounting block (bc she thought he could handle it-which thrilled me) and got him up on the horse. He kept doing this low whine and squinting his eyes, like he does when he doesn’t like the food you offer him. My heart sank, because I really had such high hopes for him. (which translates to high hopes for me- I need to work on that) Luckily, as often happens with Evan, the waiting and anticipation of the activity can sometimes cause him to whine and get impatient. But once they started to move, and the horse began to ebb and flow beneath him, it all changed. After a few short moments he started to say, “Whee!” and “Neighhhhh.” His whole demeanor changed. He held on tightly and kept his back erect the whole time, not waivering at all. I thought for sure he would try to get off, or lean side to side but I was very wrong. The therapist started to try different things, like going diagonally across the ring, doing figure eights, and stopping and starting. When she would stop, she would ask Evan to tell the horse to “walk.” He just kept saying, “Neighhh!” Then she suggested saying, “Go, Vixie!” (the name of the horse) After two times modeling for him, he did it independently when she stopped!
I was floored. We are working hard on two word combinations, but I never thought he would do one so quickly, and with a new therapist, on a horse!!! But looking back, that is probably precisely why he did respond so quickly. No need for bells and whistles when you have horses! (thanks Aimee for that realization) He probably spent about 15-20 minutes straight on the horse with no signs of fatiguing. He was especially fond of saying, “Hi! How are you!” to the young lady who was helping on the other side of the horse. He didn’t tire of looking at he and batting his big blue eyes at her and smiling before shouting, “Neigh!!” all over again. The natural feeling of riding a horse is so significant for a child like Evan who seeks sensory input all the time. He loves movement, bouncing, being upside down, rocking, etc. And a horse provides all of that in a controlled, organized way.
Sorry for the shakiness, I was trying to keep up with them with my cell phone camera. If you listen closely at the end, you’ll hear Evan exclaim, “Vixie!”
So the biggest deal of the whole experience was when he had to get off the horse. She said “Ok, Evan, we’re all done now, we have to get off the horse.” He responded by gripping as hard as he could onto the handles and sticking his bottom lip out as far as he could. She pulled him off, handed him to me and he went in to full blown teary meltdown. He wanted to get back on her so badly. I can’t really put into words how this hit me emotionally. I can say I definitely welled up with tears. Not so much because I was sad for Evan, but more because I was so excited at how much he connected with the horse, and how he truly was sad he had to get off. Evan has such an easy going temperament. He does not throw a fit when I drop him off at school, in fact, he will walk up to almost anyone, saying “Hi!” and he does not seem to lament the fact that his mommy or daddy are leaving him. (believe me I know how enviable that is) But that also means he does not display other typical behaviors, like an affinity for things that mean something to him. So to see him feel true sadness because of how much he LOVED being on that horse, it just filled me up inside.
He kept saying, “Vixie, Vixie,” on the way home and I showed him the video a few times. So now when he sees my phone, he says, “Vixie, vid-ee-oooo”
I can’t wait to take him again.
And to see how she is going to work on self feeding goals on a horse.
I met a friend today at the Please Touch Museum. We have a blossoming friendship that began because we each have a child diagnosed with WS. Her little girl is a beautiful, sweet soul, who smiles immediately when you greet her. Evan has much to learn just from watching her, as she is walking and talking quite well. I love meeting at places like this because there is so much for the kids to enjoy and we do not have to clean up after them. 🙂 However, with Evan being a 21 month old who does not walk yet- this can pose a few problems when little Stride Rites are stomping around at his face level. I made the mistake of bringing the scarf that his physical therapist has been using with him to add him in keeping his own balance while walking. Tried using that for about two minutes before realizing I was frustrating the bejeebus out of Evan. He just wanted to crawl and cruise and do his own thing. “His own thing,” includes checking out each and every stroller wheel he can get his little hands on.
This is hard for me.
And I hate that it is.
I try to play it off, saying he loves cars and trucks. He loves to push tractors and trains around the house.
That’s the truth, he does.
But he also LOVES wheels. Especially stroller wheels.
To the point of not wanting to check out all the other super cool things that all the other children playing with.
I swallow, and tell myself that it’s cool, he can like wheels, what is the big deal? My dear friend says something reassuring, probably sensing my discomfort.
I pull him away from a few different strollers, and I keep placing him at exhibits I think he should be playing with. I feel sweaty from picking him up and moving him away time and time again. Then he starts crawling towards an open door. My friend and her daughter are playing together in the “House” section, with pretend bowls and teddy bears. I notice what Evan sees beyond the open door.
This exact carousel is INSIDE the museum.
I pick him up and try to lure him over to these awesome musical exhibits with a rainforest theme. I shake every bell, bang every drum, jump up and down with excitement to keep his interest.
I pick him up and he thrashes around like I am taking him to the blood work lab at CHOP. So I ask my friend if it is expensive. She laughs and says it’s only a dollar. So I figure why not, maybe he really does want to take a ride.
As we get in line, he continues to thrash about so I put him on the ground and all of a sudden it hits me.
It is a BIG, HUGE WHEEL. With fun animals on it.
And that was all it took. Putting him down, and watching every part of his face and body light up like the Fourth of July. He hung onto the fencing around the carousel and jumped, laughed, and shrieked with delight. This was not the face of a child who was fixated in an worrisome way.
This was the face of a happy little boy.
Joy. (If you can’t tell, his mouth is open wide because he was shouting with happiness)
And we rode together on a tiger of some type. Thank goodness for that carousel. For that big ol’ wheel with fun animals on it. Slow your roll, Erin, slow your roll.
I have a few topics brewing to blog about, but for right now, I thought just sharing some random occurrences and musings would work for a Friday post.
Monkey and My Smoothie
On the Health Front: So I’m definitely doing “better” overall with food choices and with being active. But I definitely have several days in a row where I slip, and I am feeling a bit all over the place with menu choices for dinner, and my breakfasts are starting to bore me. I considered juicing. I read a few articles, liked the idea of how quickly the nutrients would enter the body, and thought it would be a good way to get more fruits and veggies into my diet. A dear friend of mine lent me her juicer to try, since they are so expensive to purchase. She wanted me to be sure it was the right fit for me. Well, I thought about it for a few days, asked a nutrition expert friend of mine, and mulled it over. I decided that juicing actually was not the right choice for my needs. I wanted to get more fruits and veggies into my diet, and increase energy. Juicing requires a LOT of produce for a little output, and bc of the quick absorption, my blood sugar level would spike and then plummet, which is sort of the opposite effect of what I would like. I tend to have blood sugar issues anyway, I always have. So……………back to making green smoothies I go. This time though, I am going to vary the fruit, lessen the dairy, and try to add in some different things like ginger, lemon, etc. I bought a LARGE amount of spinach and kale and I washed and bagged a bunch. I thought freezing fresh greens would be less than appealing, but when reading about it and thinking some more, I realized if I put it right into the smoothie, it will actually work out well because it will be cold and add to the smoothie-ness of the drink. I froze a bunch of bananas for smoothie purposes too.
Yum, tastes like Orange Julius!
At our CHOP visit earlier this week, we created a new nutrition plan for the bug, too. His calcium (well, what they were able to analyze anyway-that is another story), is okay, but we still have to be careful not to give him too much. The dietician informed me that just with his Pediasure intake, he is getting over the RDA of calcium for his age. That was news to me, and not good. So we are cutting out some of the pediasure, adding in almond milk and more purees into his “milk’ mixture. So little e had a smoothie today, too! He had 2 oz pediasure, 2 oz almond milk, half a pouch of Carrot, Sweet Potato Brown Rice, 1/4 of an avocado, and two scoops of Duocal supplement powder. PHEW! I am full just reading that! We are also hoping that with less Pediasure, he will be more interested in eating a higher quantity of solid food. So far that hasn’t exactly been the case, but we are only on day two. Slow your roll, Erin, (as my friend Talia likes to say.)
I’m full now, Mama.
On the Random Front: **My Mother in Law will be very proud of me, I cleaned my dining room chairs, got on my hands and knees and cleaned up part of the hard wood floor (we have it in a lot of rooms), vacuumed, and even dusted tops of pictures. It might not seem like all that extraordinary, but I did it, and we are not having company any time soon! 🙂 **Evan had himself a toddler-style epic tantrum today in Old Navy. So many bad decisions on my part led up to the tantrum but I still didn’t see it coming. I was stocking up on my favorite layering tank tops using some birthday money and Mr. e did not see it necessary for me to do so. So I had to hold him screaming, thrashing and falling out from under one of my arms while I pushed our gargantuan City Elite stroller out of the store. Not before I had to remember to put the few shirts I had gathered off to the side so they did not think I was trying to shoplift, ala After School Special 1989.Yes I garnered a few stares, but most of all, I had this odd feeling when we finally made it out. It was more of pride than horror. Pride because we made it out, and I was able to get him back into the stroller with smoothie in hand and he was placated immediately. But more so because it was completely age appropriate and expected of a 21 month old who was tired of being in a store. Prior to the meltdown he had also been eating pieces of a cereal bar and in between bites would moan a little and then sign “more” for me to give him another piece. Another HUGE accomplishment for Evan. Believe me, I am not saying it didn’t exhaust me, and I am taking a little extra time for myself right now during his “nap” time (that is a loose term today) because of said exhaustion. But…..I have seen plenty of parents have to wrangle their kids in stores and it just sort of felt like a rite of passage. One of which there will be plenty more. 🙂 **Did a reader in Kathmandu really read my blog? Wow.
“I am your parent you are my child I am your quiet place, you are my wild I am your calm face, you are my giggle I am your wait, you are my wiggle”
From the book, “You are my Love You,” by Maryann K Cusimano
Along with all the awesome things Evan has been doing lately, has come a bit of a price. That price to be paid, is toddlerhood. Yup, he is 19 months old, but you could say he is in the “Terrible Almost Two’s” right now. Now, I am well aware that Evan can be a joy, in fact he really is a joy about 75% of the time and I feel very blessed for that. But that 25% can be a toughie. And as with most other things, the tough parts are the ones you seem to focus on instead of the joys. I am working to fix that for myself.
Anyway, the great part of all of this is that when he throws a fit because we take him away from the light cord, or because we don’t want him to touch the trash can lid; we realize he is displaying very typical, age appropriate behavior. Not because of any syndrome or delay, but just good old fashioned growing up. He is figuring out that he has ‘wants’ and if he cannot have them right when he decides he wants them, he is piping mad! He does this fake cry that I wish I could somehow put into words because it is pretty classic. He could give Olivia Hussey a run for her money in the 1968 Romeo and Juliet movie. Come on, she was a ridiculous crier, you have to admit that. He also has attempted to bite a few times, but we have deemed it is more out of a sensory oral motor need than out of anger or aggression. We are keeping an eye on it.
I think we have been struggling a bit with the new behaviors because Evan has been the exception to the rule most of the time with his love of strangers, no separation anxiety, loving car rides, etc. We have felt so lucky. So when he started throwing tantrums our first instinct was to assume something was wrong. I was checking his mouth constantly for teeth, blaming myself for altering his schedule. Todd thought we should add back in a second nap, that there must be some solution, right?
Nope. We just have to live through this stage, however long it might be, just like the waking up 4 times a night stage. Phew, thank goodness both aren’t happening at the same time!
Some great things that have been happening as a result of Toddler Evan coming to stay- Evan:
– can climb up on the couch himself
– copies us laughing and coughing
-will take our hands and hand over hand show us what he needs help with or what he wants us to do
-can get on and off his rocking horse himself
– is clapping! -is taking turns while rolling a wheel back and forth. -is dropping items into containers regularly -is sitting nicely for reading of books, no more flipping the books all over while we try to read. (well most of the time) -feeding himself with a spoon with a little help from mom or dad
We love him, Toddler Evan, Baby Evan, whichever Evan he plans to be today. He is our wiggle, our wild, our giggle, our child.