Mommy Guilt

 

Midway through this afternoon I was already tired and grumpy. I was trying to cram about 2 days of work into a half-day because I needed to take Simon to KKI at 3; to be examined and casted for a new AFO (Ankle Foot Orthodic) brace since he has outgrown his current one. After this, we were to have an OT appointment. Needless to say, I did not finish my work and knew that I'd be playing catch up after the kids were in bed (no, I'm not caught up yet... working on it... sheesh.)

I finally stopped feeling sorry for myself about mid-way through Simon's casting. I think it is fair to say that this process is one of his least favorite, and I can't blame him. The kid never knows how long we're really going to leave that cast on (see earlier therapeutic activities for his justification). He is upset, freaked out, and overall majorly stressed-out by the whole affair. 

I couldn't help but feel badly for him. To regret (yet again) all that he has to endure. My head knows it is all for very good reason, and as he cries and asks for help, and struggles to be good and stay still despite his apprehension, I repeat this mantra to myself for sanity's sake. But my heart still aches for him. 

For such a little guy, he copes with so much. Today alone he managed a full day of school, including speech therapy and even physical therapy during recess. Then, I picked him up (he optimistically asked if we were going home, though he knows that it means an appointment when I pick him up from school) and took him downtown to Kennedy Kreiger. There, he was examined by PT and casted for a new brace. Directly following, he participated in a particularly tricky hour of OT. We came home, had dinner, and did a bit of his homework. Then time for a bath and bed. Tomorrow, back to school and therapy, and after school (you guessed it!) another session of private therapy. Speech, this time.

My tough guy is developmentally only three. It's hard for me to realize that and compare his "3-year-old experience" to what I provided his sister -- half days of utopian montessori preschool followed by plenty of mommy time, grandma time, and lots of fun outings and activities. Sure, education was important, but Livy's life was largely about being little, being loved, and having fun. It was a blast for both of us, and a sharp contrast to Simon's day-to-day.

Yet, Simon does have fun; he's a happy guy and a lot of effort is made to make learning and therapy playful for him. But his days are long, and he struggles to get through them. He often tells his aid and teacher that he misses mommy and wants to go home. And Simon is definitely loved, by just about everyone --- his family and friends, as well as his teachers and therapists. In turn, he loves everyone around him with a no-holds-barred-open-hearted affection. Everyone works hard to find the best way to help him, to work with him, to help him grow and develop. But, Simon works hardest of all -- today in OT I watched his entire body contort with effort as he struggled to pick up a jelly bean with his left hand. He is so tough, so resilient, so determined and persistent.

I know that Simon making great progress, and we all have so much hope for him to go further still. I know that we are doing what is best for him, but I also know that he is just my baby, and sometimes, I wish I could do just that -- simply let him be my baby. To be little, to have fun. To be free.

Girl Scout

Simon has a cold -- just a runny nose, a cough, and an occasional low-grade fever, nothing serious. Nonetheless, I am worried. The last time he was sick was in October (we've been reeeealllly lucky -- either that or those vitamin C-echinacea-zinc-gummi-vites acually work...). He'd had a virus, and when his fever reached a little over 102 he had a status seizure that lasted on and off for the better part of five hours. While we were in the hospital after that episode, the doctors told us that a status seizure is possible whenever Simon becomes ill (because a fever lowers the seizure threshold even while otherwise controlled with medication), and we should be prepared for it.


At the time, all I could think was "How the hell do you prepare for something like that!?," but, sure enough, I've learned to. Currently, Simon's bedroom is fitted with what I think of as the "mini ER,"  -- a suction machine, an oxygen tank, and a pulse oximeter he wears to sleep at night. We also have emergency medicine on hand, and a plan in place which dictates that, should he go into status again, we will take him directly to our preferred hospital (the one with all his doctors), rather than call an ambulance and lose time by being circumvented to our closest hospital first.


Those are the big things, the important things, covered as well as we can. I'd recommend those protocols for anyone in our situation, along with an anti-suffocation pillow and (coming soon!) a seizure response dog. I am still constantly on the lookout to find more ways to keep Simon safe and avert future crisis, as any parent would.


Strangely, though, I find that it is the little things -- the tiny comforts I have stashed, that bring me the greatest sense of inner calm. In my handbag I now routinely keep my headphones and charger, a notebook and pen, instant coffee packets, and extra toiletries for days' at the hospital uninterrupted by sleep or showering. At night, if I am really worried, I put Simon into bed with me and I sleep in my sweats. Within easy reach I keep one of Simon's favorite blankets and more appropriate "street clothes" for myself (because it is amazing how much more confident you can feel when you are wearing a proper bra and have shoes on that match). I've even been considering keeping a bag packed like I did during the final weeks of pregnancy.


At first, I was puzzled by how important these relatively unimportant things felt to me, but over time I have come to an understanding with my oddball self. True to my control-freak nature, I like them because they are the only things I actually have control over. I can't prevent a seizure, but I can make sure I have my phone charged to communicate with doctors, friends, and family. I can't avoid a PICU stay, but I can have the means to wash my face and make a cup of coffee to stay awake throughout it. I can't take this awful thing away from Simon, but I can wrap him in his favorite blanket and play him his favorite songs to comfort him. I can't change what is, but maybe, if I am a good scout, I can be prepared in mind and body to do the right thing at the right moment and we'll get through it together.


girl scout badges - 2/365, a photo by TrishSince1977 on Flickr.

Echo Bridge

Despite a thorough scrubbing, my stairs are still covered with sticky glitter. Earlier this weekend, a small boy tried to roll a snow globe down them. I don't think that it worked out quite the way he thought it would... and so, Simon learned the hard way that glass doesn't bounce.

The crash was pretty spectacular, and I think he knew right away he'd done something wrong. I immediately swooped in to save him from any shards, and after I'd checked him over (he was fine), I sat him down on a chair while I went to clean up the mess.

A few moments later (and a lot sparklier), I retrieved Simon from where I'd planted him. He'd stayed put in the chair and was crying pretty hard. I hugged him in my lap and told him he was okay. We took a few deep breaths together, and as soon as he'd recovered himself he began to tearfully recite a bit from one of his favorite Winnie the Pooh stories; falling back into his "normal" echolalic behavior.

As I held him, I realized that he was reciting from the episode about Rabbit's vegetable garden -- Tigger had bounced all over it and ruined Rabbit's rutabagas. Simon was repeating Tigger's apology to Rabbit, over and over again.

"I'm really sorry, Rabbit.... It's okay Tigger, it was an accident.... Thank you, Rabbit..."

Then, gradually, it turned into... "Simon is sorry.... It's okay Simon, it was an accident..... Thank you, Rabbit."

I realized that Simon was trying to apologize to me. He was connecting Tigger's mistake to his own, and Rabbit's reaction to mine. He was using the "social story" the episode provided to find the right words to tell me how he felt. Suddenly, the echolalia wasn't just repetition, it was an actual echo of his own meaning, his real intention.

I've imagined before that Simon's communication disability is like a vast body of water, making him into an island I can't quite reach. Although I'm still looking for a ship to navigate across it, in the meantime, perhaps I've found a bridge.

Tiggers are Wonderful Things

Tigger

"I wouldn't trade it for anything. Never, no, never.
Your friendship is the best present ever." -- Tigger

Meet Tigger, a puppy in training to become a seizure response service dog for Simon through Noelle's Dogs Four Hope. According to his trainer, Tigger is smart, VERY fluffy (he is a golden doodle), and he loves to cuddle.

Right now, Tigger is working on "Lesson One" of obedience training. We should get him in April, at which point we will continue his service dog training and work on getting him to bond with Simon and alert to his seizures. In November Tigger will return to Noelle's Dogs Four Hope for 3 final months of seizure response training. Finally, we will complete a week of training together and take a test to make him a certified service dog for Simon.

We have a lot of hopes for this 12-week-old puppy. We hope that he will be able to alert and respond to Simon's seizures. We hope he will help us to keep Simon safe. We hope that he will make Simon happy; by being an unconditional friend, by providing a social connection for him with other kids, and by aiding his independence in the future. We hope that he will make our "new normal" less stressful for our family by being a bright spot in this murky world of cerebral palsy, autism and epilepsy.

I realize that is a lot for one fluffy dog to manage. But, I have good reason to be optimistic. Though it is several months before we get to bring Tigger home, he has already brought together the love and support of our family and our friends, and has taught me a valuable lesson. You see, although the cost of a service animal is substantial, I found I couldn't bring myself to ask for help (despite the really cool magnets and buttons the Chelsea Hutchinson Foundation sent us with Simon's adorable face on it). Every time I considered it, I kept thinking that despite the expense, we are so much better off than so many. I kept reminding myself that we are the "lucky" ones -- we have jobs, and benefits, and I know that I will manage no matter what. Maybe I was too humble, maybe I was too proud. Maybe I have always seen myself as someone who gives and was uncomfortable being in the place of one who needs.

Despite my poor grace, my parents immediately came forward. They were as excited as we were to find help for Simon, and as soon as they heard the word "deposit" they were there to assist and I knew not to argue. I know that Simon is theirs, too. Over the holidays, some of Simon's aunts and uncles, his entire kindergarten class, and some of our very good friends and a long-time friend of my parents made contributions to the "Tigger Fund," in unlooked-for but generous and very welcome gifts. Such a display of support for our family was the best Christmas present I could have ever received, and again, I gradually came to understand that Simon is theirs as well. That our family is bigger than I realized.

And, it is still growing. More folks from Simon's school have asked how they can help and even people at my mom's chiropractor have sent me checks. Last week, when I had dinner with a group of dear college friends and their spouses I was totally surprised -- they had called our trainer directly and gotten together to pay for Tigger's travel expenses. They also reached out to their friends and family and are even planning to redesign Noelles' Dogs website, so that in the future it will be easier for people to donate directly to help families.

Yesterday, when I spoke to Tina, the owner of Noelle's Dogs, she told me she has been amazed by the outpouring of support for Simon. She also told me that everyone she talked to was excited to help. That they love Simon, and that they love our family. I love them back, of course, I always have. Though I can't say I am amazed (I always knew I was surrounded by amazing people) I am completely overwhelmed by the generosity we have been shown.

Tigger has already given us a tremendous gift. He has provided a way for the people who love us to do something positive and concrete to help us protect our Simon, our family. He has shown me that accepting help isn't a weakness. Though he's just a twelve week old fluffly puppy working to master "lesson one," Tigger has already brought out the best in so many people, especially me.

This is one amazing dog.

Included

Simon's classmates made him this poster when he was in the hospital this October.

I just got back from spending the morning at Simon's school. We had a scheduled IEP meeting this morning to discuss assessment results (one of many meetings this year, since we are in an "evaluation year"). We met with most of Simon's team -- The IEP coordinator, the inclusion teacher, the special education teacher, the speech language therapist, the occupational therapist, the physical therapist, the guidance counselor, and the school nurse. Missing, but planning to be at our next meeting in 2 weeks were the physical education teacher, the music therapist, the adaptive technology specialist, and the school psychologist. 12 people (not including Brian and I). It was a crowded room, and I was pretty worried that I wouldn't have enough of the cookies I'd baked to go around.

Today's concerns about pastry portions are a far cry from my feelings a few years ago, at our very first IEP meeting to discuss assessments and make recommendations. Then, I only knew one person in the room and I was very intimidated -- fearful that I would say something wrong that would negatively impact Simon's plan, that I wouldn't understand what was going on and would be cut out of the decision making, or that I would sign off on something that proved to be a bad decision and I would be stuck with the consequences.

Most of all, I felt alone.

Being the parent of a special needs kid can be a very isolating experience. Despite their best efforts, most of the people you are close to can't relate to what you are going through, and many of the specialists you turn to for help have a myopic view of your situation and your child. You often feel that no one sees the whole picture; who you are, who your child is, and you struggle to find the words and ways to explain something that seems complex and overwhelming even from the inside. As your child grows, your worries about isolation grow, too. Your child's safety and quality of life come into question; "How will they be okay when you aren't there? Will they be able to make friends? Will other adults see how amazing a person they are? Will they be able to get the care they need when they can't speak for themselves?"

I still worry about Simon. But, over the past three years, when it comes to his education, some important things have changed. At today's meeting, I was surrounded by a team of specialists that all know me, and know Simon even better. They've seen him on his best days, and his worst. They know his strengths and they know where he needs help. They were open to each other's ideas and they were receptive to mine.

I've also gained confidence in my role as advocate and Simon expert. I'm always asking questions, troubleshooting, and putting forward ideas, and I have found that -- far from being excluded -- this is welcome. Even when I disagree with someone, the team encourages me to be involved and gives Brian and I a lot of credit for being a key part of Simon's success. We've been told that they wish that more parents would do the same.

Realizing how far I've personally come was a great gift today. However, the best part of today was listening to Simon's team talk about him. They said they found him amazing, that they were proud of him, that they were concerned about him, and that they had hopes for him. More than once they called him "our Simon." They told funny stories about him (like when he pulled the fire alarm), and shared sweet moments (like when he read them his first book and made his preschool teacher cry).

After the meeting I hung around to watch Simon on the playground and at yoga time. He was surrounded by other kindergarteners that don't just tolerate him, nor do they just accept him in the pack. The other kids were constantly looking out for him -- helping him wash his hands after using the bathroom, helping him play and seek out interaction, helping him follow the rules and pay attention. Though I believe that kids are intrinsically good, I know that these children have been taught, through constant modeling and instruction from the adults, how to interact with Simon and the other special needs kids in the school. Simon's inclusion teacher and aid are particularly good at this, and the result is a community in which everyone helps one another. Sometimes, like at yoga time today, older kids with special needs help younger ones. Everyone is needed, important, included.

And I came to realize that Simon isn't just MY child. He belongs to them, too. His classmates, his teachers, his therapists. He belongs to our friends and family that have contributed to the seizure dog fund. To the people that cheer for his accomplishments when I crow about them on facebook. To you, dear reader. Simon belongs to everyone that cares about him and helps to keep him safe.

I've never been so happy to share.