Today, I am writing my first “Remy Ramble”a weekly letter that you will hopefully you’ll read when you’re older, so you can see how far you’ve come over the years. Originally I was going to make a daily letter and after a week I realized just how overwhelming that was going to be for me to write as I rather spend quality time with you and not always on the computer. So for this “first” ramble I am going to recap the last week from the daily letters I already had written.
The week started really early as you have been a bit off schedule the past two weeks and waking anywhere from 2:30 to 4 am. Thankfully for me, Daddy is who gets up with you each morning, Did you know that Dada has gotten up with you since you were a month old? It has been your special time together, before he goes to work. When you first came home from the NICU at 25 days old, we had to figure out a night schedule, like every other parent has to do. Since I was able to stay home with you all day, napping when you did and daddy had the flexibility of when to start his work day, I would tend to any need before 4-5 am and let Dada have a good solid sleep. At around 4-5 am (it depended on how the night went), Dada took over the next time you would wake and I would sleep until 9 am. Anyway, at nearly 7 years old, we still keep this schedule so lets hope for Dada’s sake, you start waking up later!
Everyday after school we take out your folder from school to read how your day went. You ate a piece of corn! By the time you are old enough to read and understand these letters, I hope that you won’t recall that eating has been a challenge for you and will look at me strangely, asking “Mom, why are you excited about a piece of corn?” Well, you have been doing great with taking teeny tiny bites from new foods, what we call “Remy nibbles”. Mrs. S, your special education teacher, lets us know what you tried each day, if any, and she notes if you have eaten anything different than a “Remy nibble” and today she did!
Once a week, usually on Tuesday’s, you have “Food School!” This week you happily jumped into the car and began to talk about all the food you were going to try, but Mama had to explain that we were trying “new” food this week. You were very excited about trying a hot dog again and I had to chuckle because, as I have said before, I never thought I would intentionally give you a hot dog to eat, let alone be excited that you ate it. Sorry Buggy, no hot dogs today, but we had a hamburger, potato, sweet potato fries, corn,pasta and sauce for you to choose from.
The awesome thing about “Sha-Sha”, your food therapist, is that she follows your lead and while I had intended for us to make pasta with sauce, she had to help make “pizza bread” out of part of the hamburger bun and the sauce. You loved it! We are so lucky to have Sha-Sha’s wisdom and expertise as she has such a positive approach to helping you on your food journey. SO we have a new “food friend” and I look forward to making “Pizza Bread” with you soon!
When we came home, you were still “wired,” which isn’t typical for you, but we used it to our advantage to keep you up a little later to reset your sleep schedule. For the evening you worked on your Disney Photo Magic Pin Puzzle. It is only 750 pieces but it is very repetitive which makes it a bit more difficult. However, you adeptly put it together very quickly and best of all, it kept you awake until a proper bedtime.
Well, it worked! Not perfectly but you woke up just before 5 am this morning, which is much better than it has been. Our concern is to make sure we get you back on schedule before the time change happens! We can’t really complain too much because over all you are a great sleeper. One common challenge that make autistics face in poor sleep patterns. It happens for many different reasons. There is some scientific evidence to suggest that people on the spectrum make less melatonin naturally which prevents their brain from telling them that its time to sleep. This my friend is definitely not the case with you! You have always been super consistent, telling Dada and I when it’s bed time and if we don’t put you to bed, you’ll just curl up anywhere, conking out in mere moments. You are just like your Dad in this regard. While I lay in bed, trying with all my might for an awfully long time to fall asleep, your dad can say “good night” one second and literally be snoring the next.
Today at school you were able to get a special treat at lunch, ice cream! You were very excited for ice cream day so when I forgot to put your money envelope into your lunch box, I sent Dada back to school to drop it off. Mrs. S sent me a message stating you are chewing off the top of your pencils and she was told that you had chewable pencil toppers that worked very well last year. While you take after your father with your sleep, you take after me in this area. As a child, and still to this day, I chewed my pencils, pen caps or anything else that was small and plastic and chew-able. Back then they just called it a “bad habit” but now I’m sure it would have been identified as a sensory issue. One other benefit that we have in today’s world is options and easy access to those options.
Last year, I purchased some pencil toppers that are meant to be chewed. Honestly, once I sent them to school, I had no idea if you actually used them but am glad to hear that you did use them and they lasted until the end of school. SO when you return to school after the long weekend, you’ll have brand new toppers to munch to your hearts content. Maybe I should get some for myself!
The other big news for today was that it was your first day going to your after school cooking program! We figured that it was a great option to go along with your food therapy journey. You proudly offered that you made a turkey sandwich. You said you tried it, but i am not so sure about that, but it’s alright! Any food exposure is a good thing and you enjoyed yourself which is the most important part.
Today was “Walk to School Day”! Yes, I realize that sounds like you walked from our house to your school, but alas, no. International Walk To School Day, is actually not until next Wednesday so I am a bit confused as to why we held it early but that’s OK. The reason for the event it to promote walking and bike safety for those that do so everyday, along with exercise and community. You always love the event and this year was no exception.
Your bus always swings by school to pick up any stranglers, to bring them down to the starting point, which is about a mile away from school. Today, the new Superintendent jumped on your bus for the ride. This made me happy as it was another way that she is showing that she will participate in activities and she got to see you and your friends in “action”. You walked with your teacher, Mrs. S and her daughter and she said you did very well.
It was also the last day before a 4 day weekend as “Indigenous People’s Day” is on Monday. One day I’ll explain what that day is, as when Dada and I were growing up we celebrated “Columbus Day” but, well, as society has progressed we have come to value all people and well, Christopher Columbus had some issues and we will leave it at that for now. For our family’ it is our wish for you to grow up not caring about anything other than a person being a human being and stand up for those who are being mistreated, yourself included.
I’ll share that one of Dada’s and my biggest worries in regards to you growing up isn’t things like whether you get married or not, or are able to live on your own, or what your receptive language progress is, but rather we worry about how you are treated by others. You see Remy, unfortunately there is still many ignorant people in this world who don’t understand what autism actually is and they can mistreat autistics, especially in school.
Little do you know, we are very blessed to live where we do and be in the school we are in as they do such a great job of giving other children the opportunity to get to know you, beyond your challenges. So far you have friends at school, despite your lack of full communication. Other children refer to you as “Smart” and are impressed with your writing skills. I can only hope that things continue this way.
Today is a day off from school! You got a bonus day to play with “Mama and Dada.” We mostly hung around the house doing some of your favorite activities like playing golf and shooting hoops but one amazing this happened today. We were sitting in the family room and you randomly came up to me and asked “Mama, my I have a banana please.” I asked if you were sure and you said that you were, so I went downstairs and fetched one. You did all the things you learned at food school and sniffed the banana, licked it and then took “Remy nibbles” from it. You sort of mushed one and got it on your finger and you licked it all off! It was great and such a step in the right direction as your “nibbles” are the teeniest tiniest “bites” ever, while there was way more banana on your finger.
I was so delighted and called for your father to come and see what you were doing. At that point you then asked for a hot dog. I figured you were simply following along with your food school structure and I again obliged and cooked up the hot dog and brought it up to you. I had cut the hot dog in half length ways and then in half width wise. Two of the quarters I left intact and i diced up another quarter and cut the last quarter into half moons to give you choices. Then you did the furthest thing from my mind. You picked up one of the intact sections and put the whole thing in your mouth. You sucked it almost like a lollipop, trying to suck the juice and the flavor out of it. You then went to the other quarter and did the same. I asked you to take a bite and you did your typical nibbles…at first. Dada brought up a fork for you and we pierced one of the diced pieces and put it in your mouth, chewed and swallowed it! Your father and I were absolutely speechless. We were so incredibly proud of you and again I couldn’t believe I was so happy about a hot dog.
You may not understand what the big deal is but not only does it show the ability for you to add a new food into your diet but it opens up another protein source for you and it also gives you an option at school or at a birthday party where you can fit in with the other kids who are liking them over a hamburger. One thing that popped into my head was field day at school. Each year they have field day and they grill hot dogs and hamburgers for the entire school and you haven’t been able to participate in that part of the day with the exception of grabbing a bag of chips.
On Saturday you created and I posted a new work of art which was quickly snatched up by a family friend but we also created and posted a very short video of you working on it. On Sunday Morning, we received a message through the Remy’s Rainbows Facebook page from a mom who has twin girls, who are a few years older than you, and have some things in common with you as well. She explained that she and the girls loved your newest painting and that they enjoyed watching the video as it was soothing for them. She was also interested in purchasing a large canvas to give them for their birthday, which is coming up soon. Well, at this point in time, we really don’t do art commissions as Daddy and I want you to be in control of what you create and how but I told the mother that I would show her the next time you did a large canvas.
You see, we have had a canvas sitting in the art room for a while and you have been itching to get your hands on it, so I figured this would be the perfect opportunity. I planned on having you create after we went to church and also to the Children’s Museum as you have been asking to go for the past week. You played and interacted with all of your favorite exhibits and had a huge smile on your face for the rest of the day. When we returned I set up the supplies needed for the large canvas but then an emergency happened. Daddy was outside trimming some branches and apparently disturbed yet another wasp nest (he got stung last week as well) and a couple came over and stung his back a few times. in the past it hurt a bit but daddy was fine, but things changed and he is now super allergic to bees! Needless to say the large art project got diverted for a bit. Daddy was fine however after the doctors took care of him but he got home after you were already asleep for the night.
Well, that is it for the first week of “Remy Rambles”, A bit long, I admit, but one thing that you’ll learn about your mother is that I am long winded, but now that I will be doing a weekly letter, Ill try to streamline the process for next week!
Both Dada and I love you to the moon and back, times infinity! XOXO