Story time y’all!
Every so often I have a Friday off from work and pick up D from school. This particular Friday he got his progress note or report card. I skimmed through it at a red light and was so proud of D’s progress I decided to take him to Chick-Fil-A for lunch. I can count on one hand the times we have actually gone inside to eat at a fast food place. This was number three or four, and was almost our last.
As soon as we walked in D saw the play area and tried to pull me in its direction. I explained that we needed to eat before we play. He seemed to understand and did okay while I ordered our food. A #3 eight-count with large fries, apple juice box and Polynesian sauce and a #1 for me, add cheese. We sat down, and had a pleasant meal, D would occasionally point to a vehicle going through the drive-thru and say, “truck”. He started getting antsy the closer he was to finishing his meal.
I asked him to let me pick up the table before we went to the play area. He entertained me for a minute. D insisted we go to the play area as soon as I was done. He opened the door, ran into the alternating platforms, quickly climbed into the most out-of-view corner and started to play his version of peek-a-boo. We had about 30 minutes before we had to head out to his pediatrician appointment. I thought 20 minutes of playing would be enough to get all his wiggles out but I’m sure he would’ve stayed in there the rest of the day. D had been in there for 25 minutes now and had no intention of climbing out. I had been calling for him to come out for 10 minutes at this point.
A young boy, I’m estimating around 7 or 8, climbed down and asked me who I was calling for. I told him there was a curly-haired boy in a blue and green striped shirt, and told him his name, as if he didn’t know it already. I don’t know who this young man is but he definitely has a career in ABA therapy. He was so patient with D, and when he managed to coax D out he let out an exhausted, “Finally!”
I held D’s hand and led him out of the play area, helped him put his coat and hat on and we quietly walked out of Chick-Fil-A to my car. No protesting, no screaming, no tears. By some miracle (and watching too many Fast and the Furious movies) we made it to his appointment on time. Thank goodness.
Baby A has been going to daycare for a month now, it is the same daycare she went to as an infant and D before her. Yesterday, I walked by the front office on my way to pick up Baby A from her class and I overheard the director speaking to a parent about their child having trouble adjusting and transitioning between activities. On our way out I noticed the director was still talking to the same parent about their child. I didn’t pay it much attention other than to make a mental note of being in that parent’s shoes at one point. I would be told how D didn’t want to participate in playing with the other kids in his class and being more interested in lining things up or stacking them, usually by size or color. Today completely changed my perspective on that conversation the daycare director was having with that parent.
We were making our way to the sign out screen by the front office and the director was venting to her assistant in her unabashed loud voice. I didn’t immediately make out what she was saying until I heard the same phrase she used the day before: trouble transitioning. As I tuned in, I could make out that she was talking about a mom who had called her to explain her son’s needs and why he was having a hard time adjusting to the daycare. It was obvious by the frustration she was letting out that the child was unable to communicate his own needs and she had to now “deal with the mother”.
“… she said he needs more time to transition… he needs a sippy cup at snack time… I told her we can’t do that because then the other kids would ask why he’s getting special treatment… that’s why she handed me that huge stack of papers… no where in there does it say that he needs special accommodations… it just says he’s special needs…”
I stopped listening at that point because my brain couldn’t handle how callous she came off and the door had closed behind us. It wasn’t until we got outside, in the cold, that I realized I had been holding my breath. Before D was enrolled in school, we would bring him here. This is what they had thought of me and my child. That could have easily been me on the phone pleading with the director to understand that D needed an extra adjustment or arrangement.
It breaks my heart that this woman gets paid to run a daycare where she openly voices her disdain for parents who simply want to help their children. Why is that so wrong? Isn’t that what our parental instincts are designed to do? On one hand, she was being completely unprofessional, on the other – at least now I know how she truly feels and how little she understands about special needs children.
I’m enrolling D in swimming lessons again this summer and I can’t wait. His gross motor skills have improved since last year and I have read articles in the past about how swimming promotes and improves cognitive and speech abilities in kids on the spectrum. I’m a believer after last summer.
D loves water. Initially, I was only thinking about safety when I enrolled him at Emler Swim School. He will run straight into a pool given the chance and in Texas, it seems like everyone has one. I never learned to swim so I couldn’t teach him myself, but I at least wanted to give him the opportunity to learn.
The first lesson could have went either way. D couldn’t get in the water fast enough but once he figured out the bottom of the pool was further away than he was tall, he panicked. He crawled out of the pool the first chance he got, ran over to me, put his flip flops on and tried to pull me out of the pool area. I knew he wasn’t going to get back in without some serious coaxing. I reassured him as much as I could and asked him to sit back down on the ledge, the instructor was able to pick him up and he held onto her like a koala. They were both in the pool and she was walking away from the ledge when she started singing to him. If there’s anything D loves as much as water it’s music.
By the time the first session was over she had him in a floating position. He wasn’t floating of course but he was able to relax his body enough to where she could hold him using one hand. The rest of the lessons didn’t always go so smoothly. When they started having him jump into the pool he didn’t want to leave. He’s had his fair share of full-blown meltdowns at Emler.
Toward the end of his swimester D was assigned a new instructor – a young man, D clicked with him like they were old pals. There wasn’t anything particular about how he asked him to do things, D just responded to him extremely well.
The same kid who was uncomfortable when too much water splashed in his face, could hold his breath underwater for five seconds at the end of summer. He could also kick and propel himself forward four feet. The same kid was also using his PECS cards regularly to request things. My kid.
Of course I wasn’t thinking about how much he was benefiting from these lessons when he was mid-meltdown. It’s tough when you’re in the thick of it but I would do it all over again for him.
The last museum I took the kids to was the Perot Museum of Nature and Science in Dallas. We started in the kids museum in the Lower Level and worked our way up to the dinosaur exhibit on the fourth floor. I’m still trying to expose the kids to a slew of activities to see what best piques their interest. Dinosaurs are a proven universal favorite.
D and Baby A each have their own way of saying dinosaur.
Baby A: dinah-saw
We passed the Apatosaurus and T-Rex fossils, gazed up at the Pterodactyl hanging from the ceiling and came across 3 different types of Triceratops skulls. Baby A was the first to shout her version of dinosaur. I said, “this dinosaur is a Tri-cera-tops.” Tai-taya-top! Way closer than I was expecting for a two and a half year old. That was before Christmas.
Fast forward to tonight, Baby A and I are sitting on the couch watching Toy Story 3. When Bonnie sat Woody down to have a tea party with her hedgehog, unicorn and dinosaur Baby A blurted, “chai-taya-top!” My reflex was to swing my head and look at her before I could respond.
I know kids are supposed to be sponges but I’m starting to think this one is a ShamWow.
My brother enlisted in the Marine Corps a couple of weeks ago. He is 21 years old and the youngest of my parents’ four children. I left home when he was barely seven and there are some days I forget he is an adult now. Most of what I remember about him is from his early childhood.
When he was three, my sister and I taught him how to spell his name. Anytime he saw a stranger he had the same delivery: “Hello! My name is Michael. M-I-C-H-A-E-L. What’s your name?” He addressed the neighbor as, “Hey Cowboy!” He was an elderly man who would manicure his grass and tend to his garden in a huge straw hat. To Mike, he was Clint Eastwood.
A couple of years after that he made a friend at school, a little girl. He was excited to talk about her when he came home one day. I tried to get him to describe his friend but he didn’t have the words. He managed to tell me, “she’s like you but more,” with a finger on his cheek. The only other thing he could tell me was, “her hair is like yours but different.” I handed him some crayons and told him to try to draw her. He drew a little black girl with braids in her hair.
I still hold on to these memories of his innocence.
As the years went on and my brain fully developed, I matured into the person and parent I am. I realize now I should have encouraged him more when he needed it.
One year, he ran away from home.
The initial panic and shock wore down just enough for me to understand that I had felt like running away so many times before as a teen. I hated the constant criticism about my weight and overall appearance. The pressure of doing well in school crushing my psyche every morning I woke up. When he ran away, I knew I could’ve ran with him. Maybe I lacked will, or maybe he lacked reasoning. My parents found him that night.
Mike is all grown up.
At Christmas last year he drank entirely too much alcohol. He never listens to others – even when they’re telling him something for his own good. Makes his decision to go to boot camp so ironic. When he initially expressed interest in the Marines, my dad was worried. He called to tell me Mike was thinking about signing his enlistment paperwork. I tried talking to him, but Mike already had his mind made up. He didn’t want to consider joining the Air Force or the Navy. Semper Fi – do or die
As a veteran I understand his life is changing forever. He is changing forever. I will miss him – the soft spoken, well-mannered, stubborn young man I knew. I don’t know when I’ll see him again, but I will always remember the days he was my baby brother.
My father grabbed his backpack, kissed my mother goodbye and rushed out the door, he didn’t want to be late for his first day at his new job. In his excitement he forgot to say goodbye to me. I had just turned five years old. Christmas was around the corner. I still remember his damp hair, jet black and straight – silk under the fluorescent light. His back was straight then, he maintained the physical build of his early twenties even though he would be 36 next month. The door closed behind him and my mother saw me standing in the threshold between the living room and kitchen/laundry room.
She realized I had been missed in the moment and said, “It’s your dad’s first day. It’s important he gets there early, this is a good job.” By now she was facing the sink. I was five but I knew what that meant: job security, health insurance, and most importantly – the possibility of moving out of the roach-infested rat hole my parents rented in a multi-family house near downtown Paterson. I had been present during too many conversations my mother had with her friends or relatives.
Last night, the paper mill where my dad had worked for 25 years and one month, Marcal, burned to the ground. Every time I saw the neon red sign from Interstate 80 I was reminded of how much time I missed with my dad, as a child and as an adult. I wondered what he did in there for all those hours. On the days he worked 12-16 hour days, did he think about me? My sister? My brothers? I barely knew him for the majority of those 25 years.
When I became a parent, the red MARCAL sign I saw countless times morphed into a nefarious idol. It was a physical representation of what kept me from having a normal and healthy relationship with my father. We sent him to that factory in a neutral mood most mornings and it usually spit him out full of rage. I remember the first silver streaks in his hair. His smooth skin hid his worry until it was exacerbated, years of steady income and the promise of overtime pay came to a halt almost overnight. I stood in the background, behind the veiled anguish, waiting for his need to know me – an afterthought. I hated that his emotional absence made it so easy for me to leave at 17.
It was D’s last week of school until the new year. I attended his Christmas party and I have to say, the kid has been holding out on me. Let me explain.
We walked into his classroom and he took off his coat, hat and backpack. Took out his binder and set it in the appropriate cubby. Then placed all of his items in his personal cubby. He sat down in his assigned seat and started beading a necklace with the supplies that were already set out. Level of impressed: 20
He noticed his name spelled out on the table in front of him and pointed to each letter, said each letter and then said his name. Um, okay. I had no idea he was recognizing letters until then. Level of impressed: 35
In the small pile of supplies was a bell, intended for the middle of the necklace he was beading. It was a small bell, the kind you see on Christmas wreaths and so forth. I picked it up and said, “bell, what sound does a bell make?” I shook it a couple of times and D smiled at me as if to say, “why do you ask me easy stuff?” He started singing Jingle Bells because I needed a heart attack the week before Christmas. (Now I admit, I’m using the word sing loosely here. He was carrying a tune and could clearly say “jingle bells” but was humming the rest.) I was slack jawed until he finished. Level of impressed: dead
I still can’t get him to tell me when he needs to use the restroom so I guess I should work on a song for that.
Here lately, he’s been showing off his growing vocabulary. This morning he brought me the PECS card for slide, said the word and then said, “weeeeee!” So I’m fully expecting him to be doing Calculus at his next Christmas party.
As the two of you who will read this know, D is on the spectrum and mostly non-verbal at four years old. Mostly because he usually requires heavy prompting but there are other times where he blurts out random words. I’m not sure if this stems from hearing his sister talk all day long or if his language development is trying to catch up on it’s own.
A few months ago, I woke up to D rustling around on my bed. I know better than to immediately open my eyes so I kept them closed and pretended I was still asleep. Once in a blue moon D sees I’m sleeping and cuddles until he falls asleep also. This particular morning he leaned in close to my face, I could feel his breath, and he put his hand on my shoulder. Then I heard, “luh you.” I jumped up so fast I scared him and he squealed in delight. What a great way to wake up!
I want. Please.
These three words are becoming more and more common in our home. D still requires some coaching when verbally requesting items. Small setback: he’s so tall he can open the refrigerator and grab a gallon of milk or juice without asking for help. So instead of a verbal request, he just follows me around with a cup and the gallon of milk hoping I get the point. When he does ask for something he will now say, “I want. Please. (Tablet).”
This one was a little tricky but we managed to figure it out with help from Baby A. D and his sister will try to fight over the same toy multiple times a day. I try to be as fair as I can, I’m not going to let them tear things out of each other’s hands. When it’s time to exchange toys I say, “it’s time to share.” This turned into Baby A saying, “share, share, share, share, share!” Because she’s the real authority in the house…you get the point. One day, D decided he wanted what she had and blurted out, “SHARE!” This has become his go to word for trying to pry something out of her hands.
Who else is a tactile shopper? With the closing of Toys R Us earlier this year I’m struggling to find Christmas presents for my kids. Don’t get me wrong, Amazon is great but there’s a difference between looking at something on a screen and actually being able to feel what it’s made of. The way it moves, it’s elasticity and durability are all important factors on whether or not I will make a purchase.
D is very hard on equipment. To the point where I can tell just by picking something up if it will last more than a day. In the past I have tried to rely on product reviews and lengthy descriptions but I find even items labeled as “unbreakable” only last a couple of weeks. My favorite place to “window shop” – in the latest sense of the term, is FunandFunction.com. (If you have kids on the spectrum or know someone who does I recommend having a glance.)
They have all kinds of toys or items for kids with any needs. I am guilty of purchasing a few items out of curiosity, to see if they would provide some help or relief for D. They are on the pricier side of what I am comfortable spending but I thought we would give it a go.
First, there was the weighted worm/snake. D didn’t know what to do with it. I guided his hand to squeeze the head and then the length of the worm/snake. He felt the beads inside and you could see his thought process play across his face.
– What is this?
– It feels different, does it feel good?
– It’s HEAVY
– Does it FLY?!
It didn’t. Every opportunity he got, he made sure to test that theory. He would swing it around for as long as he could, whacking everything in it’s path: legs, heads, younger sisters. This wasn’t the intended purpose explained on the website. It was supposed to soothe and help him self-regulate, instead he used it as an extension of his arm while he was spinning. To be fair, the construction of the weighted worm was well done but he bit a hole in it and the beads went everywhere. I figured he really liked it so we ordered him another one. It didn’t last a week.
Next, we tried a bean bag, also from FunandFunction.com. When it got to the house I noticed there was a hole in the stitching. It was tiny, so small a mouse would have struggled to put its tail through it. The next day, D was able to fit his whole hand through it and by the end of the week, his head. By the time I got a response from the seller it was beyond recognition. D had pulled the entire outer shell off of the beanbag and by that point I didn’t bother sending in the pictures so they would ship out a new one. What was the point? The next beanbag would have ended up just like the first one.
To be fair, we have ordered items from FunandFunction.com and they have held up as advertised. For the most part it’s hit or miss, and online shopping for D is usually a miss.
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This tag was created by Everyday Magic With Jubilee and Mom Life With Chiari. You can click on the highlighted names to check out more inspirational posts from their blogs. Make sure to tag them in your post so that they can read your letters of encouragement.
• Thank you for remembering about me Ana @ Mom Life With Chiari
Often times we may wish that we could go back in time and give our former selves advice and words of wisdom. If you could go back in time, what would advice or encouragement would you give to yourself?
1. Don’t be hard on yourself because …
being you is hard enough. You don’t look like any of the other girls in school and that’s okay. You weren’t meant to. You’re not fat. Your parents may pressure you into crash dieting and still expect perfect grades but you will leave their nest in two years, stay strong until then and beyond. Don’t be so hard on yourself because it all works out in the end.
2. The relationship you’re in ….
is a farce and temporary. There is so much more than being in a relationship and you can do so much better. You’re just a kid still, give yourself time to get to know and love you first. Honestly, you’re not old enough to be in a relationship yet. Your brain isn’t fully developed, no offense, it’s just not.
3. You will get through this because …
because life has a way of testing you before your next endeavor. One day you’ll be a mom yourself and you will be able to appreciate the one you have. God gives you the strength and blessing to open your eyes in the morning, be grateful. You have a big heart and you haven’t learned how to live for yourself yet but it will come. People are in your life for a reason, season or a lifetime, learn to give them their place.
4. Don’t get caught up in thinking …
you’re not enough. You may have weaknesses but your strengths far outweigh them. Believe in yourself more, you’re absolutely worth it. Don’t be afraid of failure – it happens, no one is perfect.
5. These experiences will help you learn …
more about yourself. You still have a ways to go before you’re a fully functioning adult. Your parents may not always make you feel important or even loved, but one day you’ll be a mom to two little people who think you hung the moon.