Cerebral Palsy, Epilepsy, Family, Our Son

Dear Babysitter

There are not many folks who have had the pleasure of hanging out with Sebastian without Ali or myself being present. These odd occasions have been limited to my mom and Jerry, Ali’s parents and my wonderful friends, The Rameri who took Sebastian into the grocery store with their own two boys while I went next door to get a hair cut, courtesy of my fabulous friends. They were naturals, being parents of two, just like our own parents. I remember when they took Sebastian for about a half hour to the shop, she asked me if there was anything she needed to know. At that moment, for that situation, I only thought of him pulling his hair. So I showed her how to get out of that situation without him pulling it all out.  It was a simple trip to the grocery store.

Let’s just say Ali and I don’t get out too much and I don’t get to do a whole lot on my own either. Being in Egypt there aren’t a lot of options. I have a couple friends that also have kids but it’s never been appropriate to have them watch Sebastian. Hiring someone isn’t really an option because I don’t even know where to start and training someone to take care of him for a couple hours would prove more worrisome than the idea of relaxing for an hour on my own in a yoga class. Recently we started hanging out with a new friend who is like a grandma on loan for Sebastian. And we also met her sister and after  spending time with them, I am convinced I would finally feel comfortable for someone to watch Sebastian for a short time. So then I thought, what does a babysitter need to know about Sebastian? This is what I came up with.

The Great Pyramids of Giza

Dear Babysitter,

We think you will have a fabulous time with our son, but there are some things we need you to remember while you are with him.

Things he likes to do: Sit in the rocking chair and read books together. Sing/listen to music; this includes Elizabeth Mitchell CD’s, The Wiggles and Barney DVD’s. He can watch cartoons or said DVD’s for about a half an hour. But he will want you to sit with him in the bean bag. Sometimes he can lay on his side and watch, as long as you are close by. I know. I know. I never thought my child would watch TV at such a young age. But I never thought I would have a child with CP either. So judge me not.

Toys and Playtime: Sebastian has lots of great toys. Toys he can reach up and grab onto and pull to his mouth when he is laying on his side. He also has some balls that he likes to play with, with assistance. He has some puzzles that make noise. Musical toys that light up. A ‘kiss me’ Elmo and Eeyore that flaps his ears. He just needs you to sit with him/preferably behind him since he can’t sit on his own, and help him play with the toys. He can also relax in his bean bag facing you. He also loves bubbles and trying to pop them.

Walks and drinking: Sebastian loves to go for walks in his stroller. He likes trees and looking around at things. He needs a hat for the sunshine, but I leave the sun shade up so I can see him because it doesn’t really block out sun and he likes to look up every so often too. Putting him in and out is ok, getting his arms into the straps can be difficult if his arms go stiff. If you lift them a bit above his head they will bend easier. Do not force them if they are stiff. He will relax. I always put his water next to him in case he gets thirsty. You have to give it to him/help him hold it. But beware of him swallowing it too fast and getting an air bubble. He loves drinking water. He also loves letting it drip out of his mouth for fun. He does not drink juice. He also likes to try cold things but he doesn’t like to drink them. You can see by his reaction if you try this.

Eating time:

Snack time: Sebastian likes to have a late morning snack before his nap time. It’s likely that you would not be with him at this time as he nurses after his snack to go to sleep. Sebastian loves fruit bars for snack and the occasional muffin with some soy milk. We call it Soya because Milk means mama’s milk. He knows the difference. They are yummy but harder to eat than fruit bars. Currently he is eating Date Bars since a variety in fruit bars is lacking in Egypt. The main issue with this is that they get stuck to the roof of his mouth. One of his plastic/rubber spoons should help with that. Also, putting the food in his mouth, he will open his mouth and you need to put it on either side so he can chomp down on it and slowly chew. His tongue hasn’t figured out how to move food from side to side yet, so setting it up for him is best. If the food gets to the back of his throat he will cough and he thinks this is funny (the coughing). He’s good at clearing his throat, but I always stand by ready to get him out in fear of choking. I push his head forward during these moments. By the way, are you CPR certified?

For eating lunch or dinner: Heat his food in the baby cook, I will show you how. Feed him the same way, food on spoon on one side of his mouth. We usually do some massaging and another technique to help his tongue learn those movements, but I won’t have you worry about that. It usually takes him 30-45 minutes to eat. If he gets fussy in the beginning and doesn’t seem interested in eating it is NOT because he is not hungry. It’s likely he has an air bubble, so he will want to drink water from a sippy cup which will help him burp and then you can get back to the meal. This could take some time. Getting in and out of his highchair. Walking around. Etc.  If he gets fussy at the end, could be another burp or he’s full. But he doesn’t usually get full. He eats often because he eats smaller amounts at a time because of his reflux. After his meals he gets some medicine in a dropper. I will show you how to do that. It’s easy and he loves it. Just show him the dropper and he is ready.

Nap time: Sebastian nurses before nap time and I sit with him or even sleep with him if I am tired since he was diagnosed with epilepsy in December. It helps him sleep, since sometimes he startles awake. When I am there I can hold him tight or place my hands firmly on his arms and he falls back to sleep. If I am not there he is awake by the time I get to him. And the lack of sleep is what seems to cause the seizures/startles. So it is not likely you will be with him at this time.

Seizures: Sebastian has startles where when he is laying down his arms go out and his eyes go wide and he seems stuck in the position. He starts to get scared and moans and I touch him and he snaps out of it. This has not occurred more than a couple times since we returned from Australia, where he was diagnosed, since he is getting proper sleep. Twice when he was sleeping his arm shook and I thought, maybe this is a seizure. If he does any of these activities, just touch him in the place where he is shaking and it will stop. I don’t think you will experience this because he hasn’t been doing either.

Bedtime: After dinner, Sebastian has a bath. We have a small bath for him. He loves bath time. He loves trying to eat the bubbles. And he loves being squirted with water toys. He loves reaching for the rubber ducky and pulling it to his mouth to suck on. He doesn’t always like to have his hair washed. It  gets a little cold so we always have the door closed to keep the draft out. He likes it when you make his legs splash. He loves being wrapped up in his lizard towel and getting a massage with lotion before getting his jammies on. After that he is happy to have his teeth brushed, but there is a special teeth brushing song that we can teach you. It’s likely this wouldn’t be your first babysitting experience anyways. After he ready for bed, more reading in the rocking chair. He can choose between two books if you put them in front of him, he just needs you to give him some time to lift his arm. And check that his eyes are looking at the one he hits as well.After story time it’s mama’s milk time, so this is where your time will end. Unless you arrive after he’s sleeping, in that case just listen from him and sit back and relax. If he wakes? It’s likely he has a gas bubble (those darn bubbles) and once he burps he can rub his back and bounce him a bit back to sleep.

Misc. Sebastian is recently biting his fingers. Once he learned to put them in his mouth, when he gets tired he tries to suck on them and this can end tragically. He’s even drawn blood at times. Poor guy. He obviously doesn’t do it on purpose. His jaw just clenches down on them, he doesn’t get them stuck, thankfully. But he gets very upset and his breathing sounds harsh which is his stridor. He’s ok, but the large breaths sometimes cause an air bubble. You can see we have a lot of air bubbles. The water in the sippy cup helps, then patting on the back.

When do you start?

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9 thoughts on “Dear Babysitter”

  1. dear kara,
    reading this i have new insight and respect for you as a mother and as my friend. i often think of you and tell others about the amazing relationship you have with your son and the care you take over every aspect of his life, big things and tiny details. you’re a talented, charming, courageous and strong lady and sebastian is half you! pretty good start in life for him :O)
    with love & thanks for letting me in on a bit of your lives,
    ruth

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  2. Oh Kara that takes me back! I am so happy you have found confidence in someone to stay and care for Seb evern if just for an hour so you can have some “me” time. It will do you the world of good. Sending you much love. Bron xo

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  3. Kara… a lovely, thoughtful, and thorough post by a very attentive mother. A great articulation of a typical day, as well, and all the care that you give him. I soo wish I could be there to sit with Seb!!! What a special little guy. I hope you have some luck finding people you can trust and I’ll be sending those vibes your way. ❤

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  4. i’ve not left fletcher with anyone but family, either. he sounds so much like sebastain in many aspects, so i may just have to print out this post and use it for my own purposes! i really love this post because it is such a great snapshot into your lives right now. and speaking of snapshots, the pic is priceless. it looks like sebastian snuck the camara and is taking self-portraits while you are in the background searching through your bag wondering where you put the camara. love it!

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  5. I can picture Sebastian and his movements in your every word. What a great post! I love the ending line 🙂 and am so happy you found someone.

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  6. Hey sweet mama. That was a lovely glimpse into your lives with Sebastian. I would love love love to babysit Sebastian! I hope it works out beautifully for you to have a little help with him and some time for mama; it’s so important and you deserve it!!
    Loving you,
    monica

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  7. Hi,

    I have been looking for blogs from parents who live in Egypt and who have children with special needs…I emailed a friend in Dahab and she linked me to your blog!

    I was so surprised it was you and Sebastian! He has grown so much and is such a handsome little fella! 🙂 Such a beautiful smile he has.

    I love your blog and all your photos!

    I have a blog about Occupational Therapy in Egypt (www.otegypt.blogspot.com) and would love to put a link about your blog on my blog. I wish more moms here wrote blogs…if you know of anymore, please share them with me!

    My goal was write an entry with links to blogs by parents who live in Egypt.

    Stay in touch,

    Laura

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  8. What a great post. We are like you and have left Elizabeth with minimal people and rarely go out without her. All these little details are so important for a child as young as Sebastian and who cannot yet tell you what he wants and needs.
    It is a shame that after you have found someone you are comfortable with you have to move away. We are looking forward to meeting you soon.

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