A family's story

Posts tagged ‘Memories’

I get it

This past Saturday our family ventured out to a local AMC theater for the sensory-friendly showing of Despicable Me 2. We even brought Hubz’s parents along for the ride. Originally, Hubz’s parents had offered to take the boys by themselves, but Tate can be a wildcard, so we decided that we should all go. It was a very enjoyable morning.

Tate has done the movie thing enough now to know the routine. We go through the big doors, buy our tickets by the glass, get popcorn and find a good seat. Tate was beyond thrilled that the movie was being shown in one of the big theaters. He chose seats front and center, right off of an aisle. 

He played with my phone and munched on his popcorn as we waited for the show to start. As we sat and waiting for those 5 minutes, we noticed a boy walking around the theater. He would go down a few steps, or walk across the walk way and rhythmically pat his tummy. Step step step….pat pat pat. Step step step….pat pat pat. There was a very definite pattern to it. He wasn’t bothering anyone, aside from the few times he got a *little* too close to Tate’s popcorn, and Tate shooed him away. His mom apologized as she chased after him the one time. I shook my head as if to say, “no worries”. I smiled. I get it.

After the movie, which got double thumbs up from our boys, we all went to Red Robin. We were seated in a corner booth, and Tate arranged himself so he could have a view of every ceiling fan in the joint. He also had to have the end seat. It’s his thing. 

We asked for some fries to tide us over as we waited for our meal. The waitress brought them out with our drinks. We have found that if we get Tate a little sample of what’s to come, he’s content and much less likely to get overwhelmed by anxiety about when food will arrive. 

As Tate, Jake & Cole inhaled the fries, a mom and her two children were seated at the booth next to ours (behind Tate). They had been there for possibly 5 minutes when Cole announced that he had to use the facilities. As my four guys headed out of the booth, the little boy in the booth next to ours was flipping his knife. Just.like.Tate.

My mother-in-law leaned over with a smile. That looks familiar, doesn’t it? Yes, yes it does. 

I applaud the mother in that booth. She ventured out to a restaurant by herself with her two kids. It was clear that she was overwhelmed. I know that look. It is a big deal to do that by one’s self. I get it

The little boy was fidgeting and moving all over his seat. He was annoying his older sister. She started to whine. Knowing that her son needed a movement break, and knowing that she needed a few moments collect herself, she asked her daughter to walk the little boy over to the arcade games and entrance, where there was a tv in the floor. As her kids were preoccupied, she pulled out her phone and was clearly trying to catch up on email or Facebook or the Interwebz. She caught me looking at her. She got no judgement. She got no stink eyes. She got a smile and a nod. I get it.

My boys came back and we got our food. It was a blur of action for the next 10 minutes. And then…we were done. Cole was sitting under the table. Jake was playing with his french fries and asking if he could get new Beyblades (his go-to conversation when he’s bored and unsure of what to say). Tate was playing with Hubz’s phone and was starting to stim vocally. 

We got the waitress’s attention and started to clear out. As we were finishing up, I was able to sneak a peak at our booth neighbors. Their food had arrived. The little girl was using her mom’s pen and was trying to do some of the puzzles on the kids’ menu as she ate her hamburger. The mom was pouring the lemonade from the Red Robin cup into his sippy cup. As she tightened the lid, her son flipped his corn dog the same way as he had been flipping the knife. He was playing a game on his mom’s phone. As she got a moment of peace as she nibbled a fry. She looked relieved to have that one moment. That split second of quiet in an otherwise chaotic day. I smiled in her direction because, well, I get it.

Now, I know…

This afternoon Jake and Cole were swimming with our neighbor’s boy. They are two houses down from us, and they have one of those pools that you can put up for the summer, and then take down once the weather cools down. It’s the perfect type of pool for our kids’ age group..and for our climate. This arrangement worked well for all 3 boys. I couldn’t go with them, as I had to stay on premises while Tate did his ABA therapy. Our neighbor’s nanny was fine with the 2 boys playing there, but I popped outside to check on them occasionally.

The boys had been outside for almost 2 hours, and it had been about a half hour since my last check. I crept into the grass, and watched as the boys giggled and shouted at each other while they played some silly game. They were happy, and seemed content. As I walked back to the house, I caught the eye of my neighbor who lives in between our houses. She had her 2 kids outside playing with the sand and water table. Her children are 4 and *this close* to 2.

We said hello and waved. Since her daughter and Cole are about the same age, she asked if we had gotten into the preschool with the school district. I confirmed that we got our acceptance letter. She told me that she had decided to keep her daughter at the same school where she attended 3-year-old preschool. I totally understood. For my other 2 sons, switching preschools would have been difficult. However, Cole can handle the switch, and the benefits of the district-run program are plenty.

We chatted a bit, and I was saying how it’s such a different experience to have a child who is developmentally on track. She forced a laugh, and said that she wished she knew. I knew that her daughter had been through Early Intervention–in fact, her daughter had the same speech therapist that Tate still sees. Turns out, her daughter is doing OT for sensory processing disorder, and is in a group speech therapy. Also, a few months ago I noticed a flotilla of cars ascend upon her house. I recognized an SUV and a sedan–they were the same individuals who had evaluated Tate for speech and OT way back in 2008. (OMG–it’s been that long?!) Turns out her son is doing the trio of speech, OT & Developmental Therapy.

When she told me that he had all three, I felt a pang in my chest. Tate had all 3 once. Back then, I was glad they were helping him..figured it would get him on track by kindergarten. Now, I know. I asked how her son was doing. She sighed and said he’s not progressing much. His 6 month meeting is in a couple of weeks, and they are starting to suggest autism as a possibility. She tried to shrug it off, saying that he is *only* two. That shrug. That self-denial. The uneasy smile, trying to convince others, and yourself, that it’s not what you fear. Now, I know. Five years ago I was in her shoes, doing same thing. I told her that the evaluations for 2-year-olds can be done. She nodded.

She asked when we had gotten Tate’s diagnosis. I gulped. He was almost 5. She looked at me incredulously. She thought she remembered that he was diagnosed early. I explained…he was in early intervention when he turned 2. He did the entire Early Childhood program through our school district. Midway through his 3-year-old preschool year we were told he was the most impulsive child the teacher had ever seen. We were told she believed it was “neurological”. I had no idea what the sam-hell that meant back then…but now I know. Now, I know. Neurological = Autism. Neurological = ADHD. Neurological = Anxiety. I told her that one of the doctors we had seen assuaged our guilt–admitting that Tate was a “blurry” case. He had some classic signs of autism…and yet, in some other categories, he presented typically.

I talked about how I wished I had known that some of Tate’s behaviors were “classic” autism. His meltdowns. He didn’t tantrum…he melted down. Hard. The difficulty with transition. The rigidity to routine. The sensory disorder. The sensitivity. The speech delay. The echolalia. Oh, the echolalia. The non-imaginative play. The hanging on the perimeter. Now, I know.

She excused herself as she ran to pull her son out of harm’s way. And by harm’s way, I mean he was *this close* to being clobbered by Jake and the other neighbor boy, who were now swinging on our playset. Her son was totally oblivious. As I watched, I remembered how we used to almost giggle about Tate and his lack of awareness of his space-time continuum. He really did not have a good sense of his body and where it was in relation to others. Then I just thought he was clumsy. Now, I know.

I watched her son as he played around the other kids. There was a familiarity to it. I have seen “play” like that before. The flitting from activity to activity. The being part of the group–without being a part of the group. Flapping hands as excitement mounts. Yes, I have seen that before. Now, I know.

Eventually my neighbor excused herself as her children were getting tired and fussy. The boys in my yard were loud and chaotic and overstimulating. She didn’t have to explain anything…because, well, I know.

Editor’s Note: If she does find out her son is autistic, I will be there for her any way that I can. She apologized several times for “picking my brain”. I couldn’t emphasize enough how I don’t mind at all…and that I am happy to help in any way that I can. I wish I had someone back then to help me find my footing. I had to go it alone…and the feelings of isolation and despair that it was *just* us were overwhelming. I want to let all newly initiated to this community know they aren’t alone, that a diagnosis isn’t the end of the world, and that there is always hope. Because now, I know. 

Mostly Wordless Wednesday

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Jake and his cousins prep to go down the hill.

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Hubz and Cole have fun.

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Tate waits for a turn on the red sled

We had a snow day yesterday. So did the boys’ cousins. The roads were pretty clear so we met up to go sledding. All five kids (and Hubz) had a great time!

This time of year is bittersweet

The Back-to-School season is one of my favorites. It always has been. I love the promise of a new school year, new lessons, new topics, fresh supplies, renewed friendships. I love the excitement. I love the shiny new folders and un-crinkled corners of notebooks. I love the bright wax of new crayons, and the shimmer of unused water color paint. I love the sales on pens and pencils, art supplies and baggies. I love it all.

The weather in the Midwest during this time of year is a treasure, as well. Nothing beats a crisp, cool morning. There is something to be said for the ability to step outside and inhale deeply…filling the lungs with this cool air and exhaling completely…it’s refreshing. Getting the little goosebumps on one’s arms and watching the hair stand on end. It’s a welcome respite from the heat and humidity. The afternoons warm up substantially. They are fit for picnics at the park, bike rides, and “Family Fun Day” at school. One must savor these days, as they are fleeting. In the evenings, one can wear shorts. Or jeans. Or throw on the over-sized sweatshirt that’s been waiting in the recesses of the closet. It is glorious.

In early adulthood, once I had finished my four years at school, I missed the excitement of back-to-school. I would roam the aisles of Target or Kohls and glance longingly at all of the promotional items. I would buy a notebook, or a set of pens–just so I could feel like I was a part of it. Once we had Jake, I started counting down each back-to-school season until I could go buy supplies and clothes and backpacks and all of the “fun” stuff for my children.

Our first year of back-to-school fun was in 2009. Jake was entering kindergarten, and Tate was attending the 3-year-old preschool in our district’s Early Childhood program. I got to buy backpacks, folders, crayons, pencils, and glue sticks. I remember standing, stymied, in the baggie aisle, searching for 2-gallon sized Ziploc bags. I remember my euphoria over finding said bags. (Hey, now, I was a newly-minted SAHM with an 8 week old, special needs 3 year-old, and 5.5 year old. I was due that much. ‘Kay?!) I would call my mom, and she would share my giddiness. She shared her memories of me and my sisters as we prepared for our first days of school. My mom was as much of a back-to-school junkie as I was, having been a teacher for 30-some years.

On our boys’ first day of school in August 2009, it rained. Just like it had rained on MY first day of kindergarten several years before. It was nostalgic. We took numerous pictures. Hubz stayed home and helped out with the boys. Tate’s backpack was so heavy that it toppled him backwards. We laughed. We smiled. We had so much hope. As Jake climbed the stairs of that ginormous yellow bus, we waved and wished him well…and then sighed with relief when he found a seat and waved back. We then got Tate on his special ed bus. Hubz had to lift him up the stairs, as poor Tate’s legs were too short, and he was too uncoordinated to maneuver them by himself. Once they were at school, Hubz and I looked at each other and high-fived. We did it!!

Hubz uploaded several pictures to Facebook for the families to see. Immediately my mom and Hubz’s parents commented on the cuteness. We had several friends with kindergarteners that year, so we all spent the morning ooh-ing and aah-ing over each child’s “First Day” pictures. It was a terrific re-introduction into back-to-school season!

    

Back-to-school 2010 is a blur. Looking back, I truly do not remember much of it. I know I somehow managed to get my boys’ their supplies. We got them new outfits for the first day. They made it to school on that first day…Jake started on a Tuesday. I think. See, my mom was in the hospital because she had a fairly substantial seizure. It was a side effect of her stroke…which was a side effect of her pancreatic cancer. I was torn between two worlds. One with my boys, where the future was bright and full of promise, and one with my ailing mother, who was in the twilight of her time here on Earth, where the future meant the inevitable…

On the first day of school that year, Jake had a half day, but Tate had a meet-and-greet. We walked Jake to school, and then I took Tate to his classroom. Feeding off of my anxiety with everything going on with my mom already, plus back-to-school anxiety was an awful cocktail for my beautiful boy. He barely made it in the door of his classroom. He began to stim with some play food items (asparagus, if I recall, as they were “stick” like). I did my best to give a run-down of the chaos that was our life, and the teacher nodded sympathetically. She said she’d help Tate along..and would fill the social worker in on the family situation. I thanked her profusely, and we attempted to get Tate to stand still for a picture. The picture that they were going to use on all of his items: locker, seat, job chart, etc. When we got that picture at the end of the school year, I could see the motion lines around his little body. Oh, Tater…

Once we got Tate to school the following day, Hubz uploaded our newest batch of back-to-school pictures onto Facebook. We’re all smiling…but we look hollow. Fragile. Or maybe that’s how I think we look, knowing what was going on in our lives at that time. That night, while at the hospital with my mom, I showed her the pictures of her “boyos”. (Ok, I am tearing up, just typing this…oh, how my mom loved her “boyos”.) She smiled her crooked post-stroke smile. She let out a little chuckle, one that sounded like “her”. Then she sighed. That night, my mom told me that she felt badly about taking so much of my time. Despite my protests that I wanted to be there, she simply nodded and said that it was time for me to be there for my boys. I said I could do both. We both knew, though, that I couldn’t keep doing what I was doing for the long-term. I left the hospital in tears. That weekend, which was Labor Day, I sent a message to my boys’ teachers….letting them know how dire my mom’s situation had become..and explaining why my boys may be distracted or anxious. It was not the best way to start the school year….and in many ways, I think it’s self-preservation that keeps me from remembering, fully, that back-to-school season.

    

Last year, 2011, was stressful, but ok. The boys were ready for school. I got to go supply shopping–and enjoyed it again. They helped me choose a new shirt for their first day. Tate ultimately refused to wear his, but at least he was part of the process. We walked Jake to school on the first day. That was becoming our newest tradition. The boys were excited, and Jake was a bit nervous. As we waited in the lines before the kids went into the school, Hubz had to take Tate away from the action. The hustle and bustle was too much. Luckily he founds solace next to the bike racks, where he spun his scooter tires round and round…immediately calming him down.

Once we got Jake safely off to school, Hubz stayed home with Cole, and I took Tate to his kindergarten classroom. We met his fantabulous teacher…she was a quintessential kindy teacher. She had a gleaming smile, and a gentle soul. She was young and energetic. Tate warmed up to her immediately. He let the aide take his picture for the job board and his locker. He checked out the various areas of the classroom, stopping at the computer table. He wanted to play. When I said no, he started to whine, but thanks to his fantabulous teacher, he stopped melting. She let him type on the keyboard for 5 minutes. He was in heaven.

By the time we were done, it was time to get Jake from school. We stopped and picked him and our neighbor up from their first day of second grade. They were excited. Smiles were plentiful, and the energy was contagious. We were back on a back-to-school high. As usual, Hubz uploaded our Back to School pictures. The school year was off to a good start…and I was able to exhale.

 

In two days, we will do this again. For the first time in 3 years, I feel confident. I am excited. I have high hopes for the 2012-13 school year. I look back to where we were at the prior back-to-school seasons, and we are prepared.

The Cookie Store

Our village has the most amazing bakery. It’s old-fashioned and family owned. The owners and their children (and some local teens) bake, decorate, and operate this quaint establishment. It’s nestled in a small strip-mall with a “family” liquor store (have you ever noticed that small towns have these “family” liquor stores?) , a laundromat, and an honest-to-goodness butcher. The outside of the little strip mall kind of looks like the mall that time forgot. The signage is older, and yellowing. It has a tin roof. The bakery, while now a peanut-free operation, has display cases and registers that date back several decades.  The owners and staff still take vacation a few times a year– shutting down completely. Every summer, they are gone for about a week to ten days…and it doesn’t matter. We all come flocking back. They have amazing customer service, and try to accommodate all of their patrons’ requests.

For me, the little bakery elicits memories of my childhood. Those early Sunday mornings with my dad, where we’d sneak out of the house, drive down to our town’s bakery for some fresh danish, donuts and carton of chocolate milk. The real stuff–full of fat and chocolatey-goodness. Those early mornings were few and far between, but they were special. When I step into our current village’s little bakery, I’m 7 years old again…the aroma of chocolate, sugar, and bakery wafting about. The clinking of the staff baking and decorating in the back. The chime of the door as other patrons enter. The hum of the cases that display the cookies, cupcakes, bakery, and cakes. If I could get away with it, I’d press my face up to those cases and just take in all of the different colors, shapes, and creations on the trays.

We’ve been huge fans of our bakery since we moved here over a decade ago. Hubz brought me fresh bagels from the bakery after I had Jake. We have served their Limpa bread at our Christmas dinners. We had all of the boys’ first birthday cakes made there. When we want to get the kids (and maybe ourselves) a treat, we’ll head on over to the local bakery.

Our children dub the bakery “The Cookie Store”, because they make the most yummy, cavity-inducing, waistband-expanding sugar cookies. They have the standard yellow smiley face with fudge eyes and smile. They also make seasonal sugar cookies like butterflies, flags, santas, stockings, snowmen, snowflakes, hearts, suns, stars, etc. During the football season they make them with footballs. They put the local baseball teams on cookies, too. During Homecoming, they put the high school colors on cookies. My children absolutely love the combination of the sweet frosting and the buttery-sweet sugar cookie. Who wouldn’t?

Yesterday I had to take all 3 boys with me into the “cookie store”. We were ordering a cake for our family party to celebrate Cole’s 3rd birthday. Luckily there weren’t any people ahead of us in line. As Tate watched the cake display spin, and Jake and Cole made nice smudgey kid-prints all over the display cases, I let the girl behind the counter know that we needed to order a cake. Once we figured out the right size, I asked for yellow cake with butter cream frosting. They put cherry pie filling in as a filling…soooo good! Since Cole loves firetrucks–and all kids seem to like the color red, we went with a fire truck theme. I was asked what I’d like the cake to say.

Me: Happy 3rd Birthday, Cole!

Cole: Bird-day?! For me?! I get PRESENTS!!!!!!

Tate: NO, no birthdays. No birthdays here. No singing.

Cole: I want Lego cherry-picker. I want Lego cherry-picker!!! You build it for me, ‘kay, Mom?? Momma? Mommy? Mom? Ma? Mama?!

Jake: Can I have a donut?

Tate: I want a cupcake–that one with the RED flower. It’s mine!

Me: Hang o–

Cole: I want Lego cherry-picker. And smile cookie. Mmm-hmm.

Girl behind counter: Soooo, can I get you anything else?? (Smiles sweetly while probably wishing us all away so she can go back to her peaceful afternoon.)

Me: I guess I’ll take a chocolate donu–

Jake: Long john!

Me: A chocolate long john, that yellow cupcake with the red flower, and a smiley face cookie, please.

Girl behind counter: Is that all??

Me: Yes, thanks. See you on Saturday…

Girl behind counter: Sounds good. Have a great day!! (Adios, crazy-loud family…)

I wiped the perspiration from my brow, and we set off for the car. Each of the boys was quite pleased with his choice of treat. I was just glad to get the chaos home again. When it comes time to pick up the cake for our party, I’m sending Hubz by himself. The bakery can only take so much House of Hope crazy in one week…

Happy Birthday, Cole!

On June 27th, 2009, my two boys awoke with the sun…at 5 am. Hubz rolled over, told me to keep sleeping, and took Jake and Tate downstairs to give me a little extra rest. I mumbled a thank  you, heaved my burgeoning belly over, and tried to fall back asleep. It was no use. Despite having gotten to bed at midnight the night before (after a night out in Chicago with my mom and sisters), I just couldn’t sleep. Plus, the baby was pressing on my bladder. At 6 am, I threw my feet over the edge of the bed, propped myself up on one arm, and then launched myself onto the floor. My belly felt tight. I felt ginormous.

I had a huge glass of water with my breakfast, and like all women in their third trimester, I had to use the facilities, again. I hobbled over to the bathroom, and did what all hugely pregnant women do. Except that I noticed that something was not quite right. I came out and was greeted by the sight of my 3 guys getting their groove on to some Black Eyed Peas (the kid-friendly version). I caught Hubz’s eye and said, “Not to alarm you, but…..I am concerned and will be calling the ob when office hours begin.” He said ok, and gave me a hug. We went down to the basement to chill out…and I felt it. A contraction. Oh. No.

Now, it’s not that I wasn’t ready for our third child to join us. Not at all. The nursery was done, some of the baby clothes had been pulled out. We had finally gotten Tate into the toddler bed. No, my main concern was that I was experiencing early signs of labor….at 33 weeks and 3 days. Do the math.

I called my OB and gave the office the low-down. I needed to come in when I could get there…they opened at 9. I told them that I had to wait for someone to come watch  my other 2 children, but that I could be there by 10. She said that was fine. I then called my mom at 8:00 in the morning..praying she’d be awake. Thankfully, she was there for me, and was able to be at my house by 9:30.

The doctor’s office was empty, except for a receptionist, a few nurses, and the OB on call for the weekend. We were ushered back to a room fairly quickly, and I was hooked up to the fetal monitor. The doctor did a quick exam, and thankfully I was not dilated or effaced. That was a good start. The not so great part was watching the monitor spike every now and then, as I’d feel my belly tighten. The baby’s heartrate was doing some crazy stuff, too. That bought us a one-way ticket to the L&D floor at our hospital. I called my mom. We were going to be a couple more hours. She said she’d feed the boys lunch, and get Tate down for a nap.

Once we were at the hospital, I became a human pincushion and they hooked me up to an IV to hydrate me, STAT. I was also hooked up to the monitor. Contractions were still coming. I was given some anti-labor meds. I wasn’t allowed to have the high-powered stuff, because I’m asthmatic and it could have thrown me into a bad situation. The milder drug was doing nothing. I begged to eat, but they wouldn’t let me, since I was still contracting. After a few hours, several vials of blood, an ultra-sound, and 2 IV’s of fluid, the doctor came in and checked me. I had dilated to a 1. Not much, but enough to have them admit me for the night. Hubz left to go have dinner with the boys and take a break. He’d be back later.

About an hour after that, while Hubz was hanging out with our boys, the doctor came to check on me again, before she took her dinner break. We made small talk and she got to business. She got a serious look on her face. I knew it couldn’t be good. In the past hour, I had gone from a 1 to a 3, and I was almost 80% effaced. My contractions weren’t stopping. I was in labor. They weren’t going to stop it any more. I asked if I should call my husband. The ob was very frank and said yes, I’d likely be having my baby by morning.

I was bombarded by a perinatologist, a neonatologist, and a plebotomist. A nurse also came and administered a steroid shot for my baby’s lungs. Everything was a blur. Hubz came back, frazzled as ever. I was pouring over literature on premature babies. The upside was that they were going to try to let me deliver on my own, without a c-section.

They moved me to one of the labor and delivery rooms. They had everyone on call. At 8 pm my contractions got intense. I was having trouble talking through them. I secured my epidural, and was able to relax. Then, nothing…The doctor woke me at midnight to break my water. It is believed that the reason for my pre-term labor was that I had excessive amniotic fluid. And the baby was measuring big. You know you’ve got a lot when the doctor and nurse, who see this all of the time, were going, “oh my GOD, that’s a lot of fluid.” I was able to rest a bit more. And then it happened….my contractions stopped. Nothing. Nada.

They hooked me up to a pitocin drip. That started those contractions up really quickly. However, as we went on into the wee hours of the morning, I was only up to an 8, and the baby’s heartrate was getting goofy again. The OB suggested a c-section. I agreed.

At ten to eight I went into the OR. We were told that if he came out screaming, we would be able to see him before he was taken to the NICU. If he didn’t come out screaming, which was a possibility, we would have to wait. The doctor did her test to see if I was numb, and I was, so she made the incision, and shortly after, Cole came screaming into the world. That was truly the best sound I’ve EVER heard in my life. We got to have a little looksie at our baby boy, and he was whisked away…all 5 pounds and 2 ounces of him. Which really was a very respectable weight for a baby born at 33 weeks 4 days.

He came off of the oxygen the day after he was born. He was a fighter. He was strong. He was going to make it.

The next 3 weeks were a blur of NICU visits, doctors, tests, and worry. But thankfully Cole was born healthy and robust, so he came home 21 days after he was born. That little bundle of energy has always been ahead of the curve, even with his adjusted age for milestones. We were so very worried, considering how early he was, combined with our history with Tate. Yet, he has proven to be our most neurotypical kid. To this day, I say that he’s convinced he’s capable of things that even his oldest brother cannot yet do. He’s just a competitive, and strong-willed little man.

Happy Birthday, Cole. We love you and are blessed to have you in our family.

Then

Now

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