Last year for Buddy’s birthday we wanted to get him a trike. He was turning 2, could not sit up on his own, could not press into his legs, and in fact did not use his legs much. I thought it would be great if we could get him upright and moving through the world at his level so that he could engage more.

When I first started looking I was astounded by the cost of special needs trikes. The least expensive was $350, the most expensive $5000, but on average they were $1000. Just the little contraption that helps the kids keep their foot on the pedal was $80. It was time to get creative. Luckily there are some interesting options out there for younger riders and I was able to find a good one and adapt it. Here is how…

First I started with the radio Flyer 4 in 1 for $99, which has the following features as listed on their website:

·  Removable wrap around tray with cup holder to protect your child
·  Secure 3-point harness (removable)
·  Adult steer & stroll height adjustable push handle (removable)
·  Switches from pedals to foot rests (read lockable, this comes in handy later)
·  Comfortable headrest provides neck support (removable)
·  Adjustable grow-with-me seat
·  Unique stroller-style canopy with UV protection (removable)
·  Covered bin for parent or child storage
·  Quiet ride tires
·  Sturdy steel frame
(note: no brakes, I decided no brakes was better than the untrustworthy brakes some bikes offered according to reviews.)

Then I made the following adaptions to the bike:

1.       I took off the harness and high back because his therapist wanted him to do the work of balancing rather than learning to trust the bike to do it for him. This will not be applicable in every case.

2.       I installed the front wheel backwards. I did this because when you push the bike with the front wheel unlocked, it draws the pedals around and I wanted the bike to give him the sense of alternating movement. Later when he is able to do more work pedaling, I will turn the front wheel back around so that he has to push to move the bike.

3.       I cut a small piece of no slip pad to set under him on the seat to help him sit without sliding. (I store it in the trunk with the scarf coming up.)

4.       I went to a thrift store and found Teva sandals that are a good 5 sizes larger than his shoes ($3) and zip tied them to the pedal. In this way I can simply slide his foot, shoe and all, into the larger shoe and Velcro it into place. There are a few different configurations that work when attaching the sandal, so check with your therapist about best positioning.

5.       Because his hips tend to flare I used a scarf to tie a figure 8 around his legs and the bike, tight enough to help pull his legs center, but loose enough for him to move to pedal.

And off we go. In the beginning I started out with the pedals locked as foot rests. This gave him time to organize his body sitting on the bike. After a bit I would unlock the wheels and move slowly so he could work out what his legs were doing. If he got too tired, or I needed to move faster, I would just lock the wheels again. Now that we have been doing this for a year, he can go for an hour with the wheels unlocked and at a steady gate for me. Soon, it will be time to turn the wheel around and let him do more work.

This has been my favorite find/adaption. He loves it so much! He gave his first clear “more” sign when I stopped to chat with the neighbor. He reaches out to touch all the plants and fences. He sits up tall and really looks around to take in the world, and all for under $115. Not bad.

  Well it has finally happened; ‘Buddy’ has gone to school by himself. There are so many moments in my life that are typical plus. What exactly does that mean, ‘typical plus’? It means that every parent frets about someone else watching their precious child. Every parent worries that something bad might happen. Or even something good, that it will go great and they won’t need us quite as much as before. Every parent secretly looks forward to not being responsible, for just a little while. To have a cup of coffee or tea in a quiet house with the sure knowledge you will not be interrupted for feedings, diapers or owies. All these things I know are typical. Here is the plus.

When I send my son off to school I have to worry if someone will be distracted for a moment and feed him something not on his diet, something that will make him seize for months, something that will put us in the hospital for weeks, or worse.

When I send him off to school I know he is in good hands (I am lucky in that regard). He has caring teachers who really get kids with special needs. But these women have an incredible burden. I have taught preschool and it is very challenging. These women are preschool teachers, therapists, nurses, dieticians. Yes, they have people who officially have those titles helping them, but they have to know enough to know when to call in help. They have to know enough to oversee the waiting periods. To keep these kids interested and challenged amidst all their various and plentiful health and development challenges. I have managed to do all this for one child, but they have to do it with 6, and they have my undying admiration for that. Still I worry that some crisis will happen in the room, and as wonderful as they are … I don’t really want to finish that thought.

When I send my son off to school I have to worry about his communication. He cannot talk or sign (much). ‘Buddy’ has opinions. He is determined and strong minded. It does not work to battle him. It is best to work with him. I am able to do that because I know him so well. He is potty training himself in part because I know the subtle grunt that means he has to go. Will they hear that? Will potty training revert? He is a happy boy because he is able to tell me with subtle cues and expressions that he is tired, hungry, in pain. Will they know what he means? Will he get sullen, or angry if frustration becomes a common thread of his day? Will he get bored and check out? Already he is not eating solids because I, who know him best, thought I could make him eat. He won that battle…for now.

I really just wish he could tell people what he needs. I wish he could move well enough to get out of the way, or protect himself from the everyday struggles of preschool social life. I wish I could put a protective bubble around him, and that brings us back to the typical. Every parent wishes they could do this. I guess I will just have to let him go out into the world. I will just have to do my best to use this time to restore my energy so that I am better prepared to support him when he comes home.

And now, where is that cup of tea?

This is a post that was the inspiration for my blog. I did not have a blog at the time so I posted on FB. It felt right to re post it here. For the record, right now is a good time and the joy outweighs the grief. For that I am thankful.

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I don't have a blog, so I thought I would just share this here. Thanks for hearing me out.

Let me start by saying I love my son. I am very proud of his strength, determination, joy. He is a sweet and wonderful boy who brings joy to all he meets.

Unfortunately, he is also sick. We found out when he was 6 weeks old that he has epilepsy. We spent most of his first year trying to keep him alive. There was very little time for tears. We had to learn about oxygen stats, seizure meds, CPR, ER visits, learning to speak medical jargon to speed services in crisis, feeding tubes. We spent a lot of time on humor websites. We had a choice, laugh or cry and laughing kept our heads clear.

At 5 months we started a special diet to help control seizures. It was working! It also added to our work load. No time to cry. We have to weigh, measure, track, read, create new recipes and test them. Then the ear aches came…and ear tubes…then glasses, and learning about vision therapies to add into his physical, occupational and speech therapies.

My son is almost 3, and he is amazing. He started crawling last month and I nearly cried. He is happy, starting to respond to some simple signs. Most importantly, he has not seized in the last year! (Knock wood) I should be happy, right? I am but, I am sad too. There are so many things he can’t do yet. Walk, talk, eat solid foods, push a button with a single finger, say Mom, say Dad, or recognize how much we mean it when we say I love you. These things scare me, because I have no way of knowing if I will ever see them. I fight hard to believe I will. I have to. But at the same time I grieve.

I grieve the child I thought I would have, the mother I thought I would be. I feel guilty for grieving because he needs me and part of me is distracted by the things I don’t have, I hope to have and may never have: Afternoons teaching my child to bake cookies; Days in the backyard planning our garden and planting seeds together; Making art, teaching him to draw; Walking in the woods; Riding bikes.

Some of these thing I know we can do, or will do…in time, but friends with children his age or younger are already doing them, with ease, and simple joy. They crawl up onto the counter to help mommy cook. Then they walk over to their play kitchens to practice. After a bit they look mommy in the eyes, and offer her make believe coffee. They giggle and laugh and play with their friends. They fight and get mad, cry, ask for hugs and laugh when it makes it all better. I try not to dwell. I try to hear their stories and be happy for them. I try not to be jealous or sad. And sometimes I succeed, but always there is effort. I grieve ease. Ease of joy, ease of play, ease of conversation, ease of tears.

That sounds funny, ease of tears. It is true though. I miss feeling sad, crying for a bit and letting the feeling pass. Now I am afraid to cry. There are too many tears that have been held back. I am not sure if it would be a bit or a torrent.

Now for all you friends and family, who will read this, please don’t try to protect me from your good news. I am happy for you. It is just a bittersweet happiness weighted by my experiences. One day I will be ready to say I am glad for my journey, for all of my luggage, but right now, today…I wish I had a lighter load.

Seems like telling our story is a good place to start. After years of efforts to start our family, Buddy (name changed for his privacy) came into our lives through adoption. He has a lovely birth mother who made a difficult choice for his future and allowed us to become his parents. She did everything right and his birth was healthy. Unfortunately, there are no promises in this world. Six weeks later he had his first seizure. It took only a week to diagnose this in part because we filmed an episode. When the ER docs saw the video they admitted us and rushed a 24hour EEG (pictured here).

It was a horrible 24 hours. He had a seizure within the first couple hours and we were told without a doubt that he had a seizure disorder. It seemed our son was an over achiever, he kept seizing...every hour on the hour some lasting 20 min and requiring rescue meds. By noon the next day we had tried several meds and were in the ICU. This is what our life would be. Watch for a seizure. Stop the seizure. Track the seizure.

We are incredibly lucky that we live near a Children's Hospital and we fell in with some amazing Doctors, nurses, dieticians, and therapists. Without them he may not have survived. Still at 6 months we were running out of options. We decided to try the KetoGenic Diet. This is a high fat diet which somehow changes the chemistry in the brain to help control seizures. For us it worked. It took a while and a bit of futzing with meds, but we are now on our longest break from seizure by far and praying to never see one again.

Since getting a break from the seizures and the meds, Buddy has started to make milestones, slowly and very much at his own pace, but he is making them. Buddy is now able to crawl, laugh, hold his own bottle, do a couple simple signs, and much more. We have challenges ahead to be sure. Because of all of the trauma, Buddy has been left with low tone a form of CP, Cortical Vision Impairment, he does not yet talk or walk. I have faith that he will do all these things, in his own time and in his own way.

During this journey I have been challenged to find ways to transform the world we live in to better receive my son, and to make it easier for him to receive. I have adapted many things from my thoughts and internal landscape to his toys and his external landscape. I plan to use this space to reflect and share on all these changes and challenges. Thank you for taking the time to walk along with us if even just for a bit.