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Stereotypes

Last month we got a little note sent home in Jaxson’s lunchbox. It was a note telling us that he had upcoming school photos. Immediately I got excited. His very first school photos! Of course we have more than enough nice pictures of him, the perks of having a mommarazzi. But there’s something about school photos that I will totally get sucked into buying.

A few days before his scheduled photos I started thinking about what he was going to wear. Should he go all preppy in a collared shirt or should he go as ‘cool kid’ in a rad shirt and ripped jeans? I consulted friends and the consensus was preppy.

That morning I sent him to school in a nice crisp outfit. Lots of spare jeans in case he had an accident before the photos. I told him that he was going to get his picture taken today not by mommy and to give his best smile ever.

I picked him up later that day. One of his teachers told me he gave them all a run for their money. Apparently the photographers had a nice set with an old desk, with books, and pencils on top. I didn’t need to hear more to know exactly what that scene looked like. lol! I knew those books, pencils and his glasses were going to be tossed all over the place. But when I saw who the photographers were I breathed a sigh of relief. Knowing that on of the photographers has a nephew with Down syndrome I knew that they would have had extra patience with Jax.

A week or so went by and I was excited to see the uploaded school photos. I logged in to the photographers website and eagerly scrolled through the kids. Oh all the pictures were GORGEOUS!! Those cute little smiling faces. They all looked SO good. Then I got to Jaxson’s folder…..

Initially I laughed, hard! Alex came to look at his photos and laughed harder with each picture we flipped through. But as quickly as they made me chuckle my heart started to sink. A very sad feeling washed over me. I couldn’t help but wonder what the other parents were thinking when they scrolled passed Jaxson’s photo.

They don’t know him. They don’t know his fun, happy, silly personality. They don’t know how smart, and loving he is. They don’t know him. So what did they see when they saw his photo?

Did they see that ‘Down syndrome stereotype’?. Did they see the all of the other stereotypes of Down syndrome? Not just physical stereotypes, but all of them…… God I hope not! I was so so sad just thinking about it. The thought of anyone putting Jaxson in that small box just broke my heart.

Then it hit me that this is just the beginning. This is only the beginning of wrongful stereotypes (not that it even happened in the first place). Even if no one thought it this time, we have a whole life ahead of us.

This is why we do do what we do. This is why we share Jaxson with the world. I want everyone when they look at these photos to see a moody little 3 year old who’s having a rough day. A 3 year old who wants nothing to do with his school photos. A stubborn little boy that is refusing to smile at all costs. When I say at all costs I mean it. The photographer later told me that they were singing and dancing to Moana for him AND they even brought out a PUPPY. A freaking puppy folks!! And this was his reaction.

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Thank you Megan and Kari from MeKa Studios for taking the most amazing pictures of the kids. They all looks so good!  And thank you for trying so hard to get something out of this stubborn little boy! Maybe next year he will flash you guys something to work with, hahaha.

(thank goodness his mommy knows her way around a camera and we don’t rely on yearly school pictures for ‘good’ photos)

 

 

Jaxson’s User Manual

I’ve made a couple of posts about ‘Jaxson’s User Manual’ that I made for his school. The response to the manual has been HUGE. People wanting to know exactly what is in it, or better yet, people wanting to pay me to make them one! hahaha! So I thought I would write up a quick blog post showing you what his user manual is all about.

The day we took a tour of the preschool he was going to be going to in early spring, was the day I started to get extreme anxiety about him going. I knew the day would come, but didn’t think it would happen so fast. The opportunity presented itself for him to go to our first choice of preschools even when he was a tiny baby. So we jumped on it and got him enrolled!

As his start date quickly approached my anxiety was going through the roof. The thought of sending our non-verbal kid away from home was too much for me to take. How would his teachers know what to do? What he wanted? What he was telling them? Deep in my brain I knew his teachers would know all of these things because thats their dang job, they work with kids EVERY DAY! But for my own mental well being I had to do more. After consulting with another Ds momma I came up with a game plan to ease my anxieties.

I made his school a “user manual” so they could get to know him, and how to deal with some of the roadblocks that may arise.

My biggest fear was his ability to effectively communicate his wants and needs. For being non-verbal Jax has always been an amazing communicator. He uses sign language, gestures and hand over hand (his hand showing our hands what to do) to tell us what he wants. We have never had any frustrations in communication breakdown with him, but I knew it would be an issue for people who don’t know him. So I began his user manual with 20 or so signs that would come in handy at school. Jax had just over 100 signs at the time but I didn’t want to overwhelm them! I took photos of what Jaxson looks like doing the sign, a description of his version, then a cartoon of the ‘proper’ way to do the sign along with the proper description. This way his teachers could understand what he was signing to them as well as give them the ability to properly sign it back.

After the communication part of the book I just touched on a couple topics that will arise at school. Potty, eating, allergies, his physical abilities, stimming etc. I also gave a little description of Down syndrome and what that looks like for Jax.

This is the second version of the manual I sent with him at the beginning of this school year. He has changed so much and gained so many new abilities over the summer that it called for an updated book.

Here it is! I’ve attached the PDF if thats easier for you 🙂

Jaxson user manual 2.0 PDF

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Potty Training! Jax did it!!!

We finally bit the bullet and decided it was time to get Jaxson fully potty trained. He was showing signs that he was ready (will get in to detail on that below), and the timing just seemed right to give it a go. We were finally home and able to put in the work, and Jax wasn’t due back to go to school for another 2 weeks, so it just made sense to give it a try and hopefully send him back to school in undies!

One of my online Ds momma friends posted a blog that she read/followed about potty training kiddos with Ds. Alex and I read it, initially thought it was a bit to intensive for us and did our own thing. Which resulted in us putting him in undies for 2 days and realizing that if we ran him to the potty every 20 minutes he will never learn to hold it and initiate going to the potty himself. Jax is a very complacent little dude and we knew his laziness would have him never fully potty trained and just relying on us to run him to the toilet. Which is not conducive and not realistic to send him to school and have him relying on his teachers to do that. So after 2 days in undies, countless accidents and lots of frustration we decided to give this ‘intensive’ method a go.

Here is a link to the blog. This momma explained the method VERY well. Please click on the link and give the “program overview” a read before moving on with my post.

http://theadventuresofnolan.blogspot.ca/2015/08/intensive-potty-training.html

Ok now that sounds like a lot of work right!?!? It is!! So here’s our experience with this method…

Where Jax Was At When We Began:

  • We definitely didn’t go from diapers and no knowledge of the potty straight to potty training. So to be fair here is where Jax was at when we started training. For the last year Jaxson has been wearing pull-ups, only because laying him down to change a diaper would be  damn near impossible!! Jaxson has been using the potty successfully for about a year now. He started when he was around 26 months old (I HATE having to break down his age in months….). Because of his constipation issues he was almost immediately poop trained because it was so much easier to ‘get it out’ sitting on a potty than in his diaper. I know poop training a kid can me much harder than pee, so I am thankful that was never an issue for us. Jaxson has been peeing on the potty for the last year and goes when we put him on. He also doesn’t mind peeing in his pull up. When we are home we would put him on the potty pretty regularly, however we never bothered taking him to the bathroom when we were out and about.

Showing Signs of Readiness:

  • For about 2 weeks prior to potty training we noticed he was staying dry for long periods of time and waiting for us to put him on the potty. He was also making ‘pushing’ sounds but never peeing. At first we thought something was wrong (like maybe a UTI) but after a couple of days we noticed that was one of the ways he was telling us he needed to go to the washroom.

Our Plan Of Action

We deviated from the program you read in Nolan’s blog. Reading it and coming up with our own plan was crucial in the success of getting Jaxson potty trained. Here are the things we changed up for it to work for us

  • The original program is all about having the child learning to initiate going to the potty. Given the layout of our house it wasn’t super feasible to have Jax in a sectioned off area right by the washroom that was easy to clean, and a SAFE place to play. We decided that Jaxson would be able to tell us ‘yes or no’ reliably when we ask him if he needs to go to the potty. So instead of having him initiate going to the potty we ask if he needs to go and follow his lead by his answer. If he tells us ‘no’ we don’t take him.
  • The original program calls for solid days at home with 110% focus on potty training. THAT WOULD DRIVE ME TO THE BRINK OF INSANITY!!! We all HATE being cooped up at home. That was not going to work for us. We dedicated day 1 and half of day 2 to being at home and then began bravely taking outings. Short at first to test the waters then lengthening them.
  • The original program calls for the child to help clean up the accident. That was NOT going to fly because we knew Jax would love that! hahaha!! So we nipped that in the butt before we started and took it out of our plan.

Here is a quick breakdown in point form of what we did and then I will write about how each day went. Jaxson’s reward for staying dry was watching “Paw Paw” (Paw Patrol). So When he stayed dry he got to watch. Which meant watching A LOT of TV!

  • Our mornings started off with putting his underwear on and telling him that he can’t pee in his underwear. “No pee pee in underwear, Jaxson goes pee in the potty”
  • And enter Paw Patrol. Jaxson got to watch Paw Patrol as long as he was dry. The first few days we did constant (every 5 minutes) ‘wet checks’. When he was dry we made a HUGE deal out of it “JAXSON IS DRY!! YAY!!! Jaxson I am SO proud of you! Dry boys get to watch ‘paw paw’!!”. Jaxson responds SO well to praise and was loving it.
  • At the beginning we would ask every 10-15 minutes “Jaxson do you need to go potty? Do you need to pee”. If he ignored us we would make him look at us and give us an answer. If he told us “no” we wouldn’t take him potty and ask again in 5-10 minutes. If he had an accident after he told us “no” we initiated our “accident routine”
  • We NEVER took him potty just to take him potty because we thought he had to go. Jax needed to learn that he has control over when we take him. If he chooses not to go then he has to hold it. If he chose not to go and right after had an accident then he had to learn the hard way.
  • When he answered “yes” we would take Jaxson potty. We also gave him control by letting him pick which potty he wanted to use (his little Ikea potty or the big toilet with a potty seat). We put him on the potty and would say “thank you for telling us you need to go potty”.  When he peed on the potty we would give lots of praise “YAY, JAXSON PEED ON THE POTTY!! Good job Jax, we are SO proud of you!!”.   If for some reason he didn’t go pee right away (within a minute or so) we would take him off and tell him “the potty is to go pee. We don’t play on the potty”. This rarely happened but the odd time we would put him on and he would try to play and goof around. He needed to learn that the potty was not the place to play.
  • Our accident routine: Immediately we stopped the ‘fun’ ie; turned off pawpaw. We then say “oh no! Jaxson is wet, no more fun. Fun is done” then we would run him back and forth from the ‘accident scene’ to the potty and say “you’re wet, you need to stay dry. Pee goes in the potty”. This part seemed silly and redundant. It also seemed useless as he would giggle as we went back and forth. But I also think that this was essential in the training. So just keep on it even if it seems dumb! We also NEVER sat him on the potty when he had an accident. It is crucial that he leaned he goes to the potty dry.
  • Of course he asked for pawpaw right when we went back to the living room, but we would say “fun is done. Jaxson peed himself. No more fun” (in a stern, scolding voice). He would get mad, kick his legs, and cry. I got deep satisfaction out of this part because he understood that he was being punished, and he hated it! hahaha!
  • Then we would continue on with the ‘dry checks’ and praise when he was dry. I found it hard to go straight back in to praising him and being positive because I was still a bit peeved about the accident that just happened. lol. But I forced the positivity back and he responded immediately. We would not bring back the reward (pawpaw) for at least 20 minutes after the accident.

Daily Progress

Day 1:

  • Day 1 of the program was LONG. We committed to staying home the entire day, which we NEVER do. Jax watched paw paw literally from morning till night. Since this was our first day we asked him if he needed to go potty every 10-15 minutes. At first he didn’t really understand but we made him give us an answer (yes or no). Once he said ‘no’ and he peed himself minutes after. That was all it took for him to ‘get’ what it was all about. He had total control over when we took him to the bathroom. He had 3 accidents that day but overall we felt very encouraged.

Day 2:

  • Day 2 was horrible!! Alex was working so it was all on me. I decided that we would stay home for most of the day and venture out late afternoon. He had literally 4 accidents by 10 am!! I was so discouraged….. This was technically day 4 in undies (day 2 of the program) and I was ready to throw in the towel. I know, I know, potty training takes time, like lots of time!! But I was already done with cleaning puddles and being mad. I text Alex and said “I don’t think he’s ready. I’m not sure if he gets it” and was totally implying we just quit and get the pull-ups out. Alex reassured me that we need to persist and to give it at least 3 more days. If we have seen zero progress at that point we can reevaluate. I persisted the rest of the day and he did ok. He had one more accident on his grandmas couch (oops!!!) but otherwise stayed dry.

Day 3

  • Jaxson stayed dry ALL DAY!!! We were still asking every 15-20 minutes, and every 5-10 minutes after he answered ‘no’. There’s nothing else to say other than he wore the same gitch from morning till night!! We had many outings this day as we were prepping to go camping. We just made sure to ask him lots when we were out and about and no matter where we were we would stop everything and run (literally) to the washrooms.

Day 4

  • We woke up cautiously optimistic. Knowing that day 3 was most likely a fluke we were prepared for accidents but hoped for the best. We had lots of running around to do as we continued our camping prep. And what do ya know, he stayed dry!! This is when we started spreading out how often we asked. We were now asking every 30ish minutes and 10-15 minutes after a ‘no’.

I feel very confident to say that JAXSON IS POTTY TRAINED!!!! We survived camping and being away from home and out of routine. Jax came down with a sinus infection while we were camping and ended up having an accident on the day he was feeling the worst (to be expected). Otherwise he is staying dry and has even ‘told’ us on a few occasions that he needs to go potty.

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We are still doing ‘wet checks’ just not as often. We are still giving LOTS of praise when he’s dry and telling him how proud we are. We are still cheering and praising when he goes to the potty as well. We are going to continue with the dry checks and the potty praise for quite a while.

To say we are blown away is definitely an understatement. We never expected this to happen so quickly. Yes he was already 60% there before we started, but still! This week he starts back at preschool. I am VERY nervous to see how that goes as up until now it has only been Alex and I who have been on top of him to use the potty. He is also getting his new full time aide this week so on top of going to school he is going to be with a new person. I will be packing LOTS and LOTS of undies and pants and hope for the best.

 

Blogging By Candlelight

Hello there!! Remember me? Probably not!! Just taking a peek here and apparently my last post was 6 months ago…. Ummmmm holy hell has it been that long!?

Needless to say our life is crazy. Turtle Nest Co. has become WAY WAY WAY bigger than I had ever thought. It occupies ALL of my spare time. Alex has made some comments here and there, “wow it’s been a long time since you’ve blogged” or “don’t you think you should write a blog post”. This makes me want to backhand her, lol! But she’s right.

So tonight just as I finished tucking Jaxson in, a thunderstorm knocked the power out. So here I sit with candles flickering beside me, my sewing machine doesn’t turn on, and the house is completely silent. It’s time to write a blog post!!!

I honestly have NO clue where to begin. 6 months is a LONG time. You would not even believe the amount of stuff that our family has been through in 6 months.

Let’s start with Jaxson! Let’s see….. well, we celebrated his THIRD birthday! I find it crazy that we have a 3 year old!! Jax recently started pre-school and he is absolutely loving it. We have already seen a huge change in his development since starting and couldn’t be more thrilled. Can I be honest for a second? Dropping him off and coming home to a quiet house is PURE BLISS!! I have so much more time to sew, Alex has time to work on her schoolwork, and we even put those things aside and go for coffee dates once in a while. It is honestly AMAZING.

Jax is doing a lot of walking with his walker lately. He’s becoming more and more confident on his feet. He’s also signing up a storm (as per usual). He has over 100 signs now and is pairing up to 3 signs together to make short sentences. He is also super vocal now. He says ‘mom’ or ‘mama’ on a very regular basis now to get our attention. He is currently obsessed with Maui from the movie Moana and flexes his ‘Maui muscles’ ALL the time. He actually came up with it all on his own from watching the movie which is pretty amazing!!

Next week we are celebrating his third ‘Gotcha Day’. To me this day is even bigger than his birthday.

Now onto our family….

Well we’ve been through the ringer. For those of you who don’t know, we committed to adopting another child back in January. For many many reasons that adoption unfortunately fell through last month. We had to take a stand and put our little family of 3 first. I wish I could talk more openly about it, but out of respect for him, and his birth family I won’t.

Needless to say we have had a lot on our plate. We spent months and months preparing our hearts. And have spent a lot of money getting our house ready for another child (not that the money matters). We are hurt, a tad jaded, and more guarded. But we are firm believers that everything happens for a reason ❤

Alex has been working hard on her schooling and is SO close to completing her degree. Couldn’t be more proud of her! Then it’s on to her masters. She is also training hard as she is competing at the World Police Fire Games in Los Angeles this summer!! We are all very excited for this experience. Grandbaa is also coming down with us, which will be tons of fun.

As for myself. Well I sew….. I sew some more….. and then some more….. It seems like there is never enough time in the day. Always running from one appointment to the next. Jax is busier than ever, and I happily chauffeur him to all of his engagements. I plan to get back into yoga and doing something for myself.

Did I mention that Jaxson mean Sean and Elena from the show Born This Way!! That was a pretty cool experience. We attended our very first Canadian Down Syndrome conference where they were the keynote speakers. The conference was AMAZING and we learned so much!

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Well the power just came back on, time to sew!!

lol. In all honesty I really plan to get back on to regular blog updates. It’s easy for life to get in the way and push it aside. But to have this modern time capsule for our family is priceless. I promise to keep in touch ❤

 

Taking It All In Stride

I love our Down syndrome community so much, but sometimes I really really hate it. Recently our community has lost some perfect little souls. Some were due to crazy freak accidents that could happen to any one of our kiddos, others were taken by cancer, and a few succumbed to cardiac issues post open heart surgery. In such a short period of time our community has been mourning one precious child after another. It’s not fair, it’s heartbreaking, it’s completely and utterly devastating.

My heart is completely shattered for the parents and siblings left behind. It’s unimaginable the pain and sorrow those families are enduring.

It’s the constant loss to our community that makes me want that giant bubble to put Jaxson in. Everything is hitting so close to home and my paranoia goes through the roof! Some things you can control but ultimately it’s not in our hands. Whatever will be will be.

In light of Jaxson’s recent anemia scare we’ve had a couple people tell us that they feel so bad for us. We’ve been through so much already with Jax and it’s just not fair. While I am thankful that his ‘issues’ are being recognized, we feel the complete opposite.

Jaxson is HERE. He wakes up every day with a giant smile on his face despite how crappy he must be feeling. Every morning we get to sit sipping our coffee and watch him flip bowls in his fire truck (don’t ask). About one thousand times a day we are subjected to his super tight hugs around our neck (it’s a tough life!!), and are on the receiving end of his open mouth sloppy kisses. We get to bask in the joy of watching him learn new signs and see the pride that washes over his face when shows us that he knows how to ask for something or that he can make a sentence using multiple signs. We giggle at his toddlerhood every night when he asks for more books, and flips out when we tell him “no more books it’s time for bed”.

We will take and continue to take every single diagnosis that comes his way in stride. Open heart surgery. Waking up with him one bajillion times a night because of severe sleep apnea. CPAP turned BiPAP – still waking up one bajillion times a night…. Therapy after therapy, temper tantrum after temper tantrum from said therapies. Eating issues. Sleeping issues. Did I mention sleeping issues? One more time, sleeping issues. Severe anemia. Reoccurring severe anemia requiring a blood transfusion. And now here we are on the brink of a Celiac’s diagnosis. So a possible lifestyle change, an increase in our grocery bills, and being hyper-vigilant of the foods the 3 of us consume.

All within 2.5 short years. We know there will be more to come, and thats ok. We didn’t sign up for it by adopting a child with Down syndrome. We signed up for it when we decided to become parents. PERIOD.

So like with every past diagnosis we will continue to take each new diagnosis with a positive outlook because JAXSON IS HERE.

Life is too short….. My community has taught me that

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Jaxson Rides A Horse

When Alex started her job at Suffield Fire Dept. one of the guys approached her asking about her son with Down syndrome. He then went on to tell her that a local speech therapy place contracts his stables and horses to do hippotherapy with children. He encouraged her to check out and said that Jax was probably old enough to do it. It was something that we definitely wanted to try with him and we talked about it quite often.

Fast forward a few months to when I saw that this speech therapy place had posted on facebook that they were starting a hippotherapy session this fall. Immediately we got super excited and called to find out more. We had to get the ‘ok’ from Jaxson’s pediatrician, and to have him cleared with his low muscle tone and the potential neck problems kiddos with Ds can have. Once we got the go ahead from his doc, we took him in to Speech Language Works to have him assessed on their end and make sure it was something he would be ready for, something he would physically capable of doing, and something that he could benefit from. We were over the moon excited when he was ‘approved’ to start hippotherapy!

The weeks leading up to his first session were filled with crazy anticipation. We talked about how he would handle it, and how cool it will be to see him on a horse. We were convinced that he was going to love it….. well it didn’t quite go how we thought!

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The first day of hippotherapy was all about familiarization with horses. They started by letting him visit with the little pony first. Then it was time to put his safety belt and helmet on. Well that was the beginning of the end! He lost it when we got the helmet on and was impossible to console. Non the less we took a screaming Jaxson to meet the horse he was going to ride for the duration of the therapy block. Her name is Zoey. Zoey is BIG compared to little Jaxson. They hefted this screaming 2 year old onto he back and took him for the shortest ride in the history of horse rides. Jaxson continued to cry the entire car ride home and finally settled when we got home.

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At this point we were pretty sure we just threw a ton of money straight down the toilet. Definitely not how we planned it happening! We worked hard over the next week on getting him desensitized to his helmet, which definitely helped!

Each time we went back to hippotherapy he would cry less than the time before and was able to ride Zoey for a bit longer. By his 4th day of hippotherapy there were no tears and he rode her the entire time. Each week after that he got more and more excited to see Zoey and be on her. The last couple weeks his favourite thing to sign is ‘please horse’ and he literally is signing ‘horse’ for everything!

Since the hippotherapy he was doing was targeted at speech he had an SLP walking beside him. They would sing songs, sign, work on making verbal sounds, play games, play with little toys and do little activities.

I’m not going to lie, I don’t like horses…. When I was a kid I was bit by one and got my foot stepped on by one. I’ve also been to a surprising amount of tragic fatal accidents as a paramedic involving horses. They are big and they scare me. But seeing Jaxson on Zoey has totally changed how I feel about horses. It was honesty the most amazing thing to witness, and a couple of times I welled up. She was so responsive, gentle, and was very sensitive to his needs. We were told that Zoey is naturally a very fast walker and they have to almost do a light jog to keep up with her. Well when Jaxson was on her they couldn’t get her to pick up the pace! The person leading her would be almost trying to pull her with the lead and she would not walk any faster than what she was doing. She knew Jax was a little guy and could feel he was not super steady on her, so she walked slow. SO AMAZING! By the last couple of sessions Zoey was starting to walk faster as Jaxson had learned how to be more stable on her, but the second Jax would lean back to pet her she would press the brakes and slow right down! Seeing Jaxson ride Zoey was honestly one of the most amazing experiences to be a part of.

I have saved the best part for last….. Let’s talk about the gains and results we have seen from hippotherapy. The HUGE thing is Jaxson is walking while holding our hands!! The improvement in his strength is incredible!! Not only does he want to be on his feet, the second his feet hit the floor he is taking steps. From the kid who literally REFUSED to put any weight on his feet for over a year, this is a miracle. He is still quite unsteady in his hips, but once he figures out balance he will be off and running. We have also noticed a HUGE improvement in his signing and verbal banter. The sounds coming out of his mouth are constantly changing and he is picking up new signs like there’s no tomorrow. Yesterday while we were working on making the ‘mmmm’ sound, he put his hand to his chin, signed ‘momma’ and VERBALLY SAID “mmmmmmom” with ZERO prompting! He did it twice in a row and 3 more times today. MUSIC TO MY EARS!! There is not a doubt in my mind that all of these gains are a direct result from hippotherapy

I can honestly say that hippotherapy has been by far the best form of therapy we have done! We are so very thankful for the opportunity to do this with him and can’t wait for the next round to begin.

 

A Long Time Coming

It’s no secret that we have endured some major sleep issues with Jaxson. He was an amazing sleeper until he got RSV when he was 8 months old and it was all downhill from there.

The single most frustrating part of this journey has been waiting for referrals, appointments, results and proper treatment. It took 16 LONG horrendous months from the time we got referred to the sleep clinic until he was on the proper treatment regime. During those 16 months we were dealing with 10-15 wake up’s every single night. There were many nights where I would just sit there holding him and cry out of frustration, anger and exhaustion.

Needless to say over time we developed bad sleep habits just to survive. We went from having him in his crib in our room to co-sleeping, which allowed us to get a little more sleep. He would always fall asleep in our arms and needed constant cuddles throughout the night.

We got the results from his last sleep study late this summer which showed he was on the appropriate pressures. His BiPAP machine needed a bit of tweaking as they increased the back up rate on the machine, but that was it.

Now that we knew the medical aspect of his sleep apnea was 100% being correctly treated we knew it was time to tackle the dreaded sleep training. We also knew that we were too far gone to tackle it on our own!

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We had ZERO clue what method would work with him being on BiPAP since we can’t let Jax cry for long without him getting super snotty resulting in his mask having to come off and basically start from scratch. So we bit the bullet and hired a sleep consultant.

I will be honest and say I was super apprehensive about this whole thing. I was terrified that the consultant would tell us he has to get rid of his soother (we’ve tried and it was a disaster), or that we had to do the cry it out method, or she would tell us we are screwed and basically never going to sleep again. hahaha! Well I was wrong about everything (as per usual). Our face to face meeting was wonderful and so reassuring. She understood our situation, didn’t tell us we are horrible parents, and she made a total doable sleep plan that catered to Jaxson’s special sleep needs.

First step was to put his crib back into his own room. Which might I add it didn’t HAVE to happen to roll out our sleep plan. But we knew that Jaxson would just do better without having the option of mom’s bed right there. Also it is much easier for ME to cave and bring him to our bed and basically screw up our hard work. Yes, I say ME because I HATE HATE HATE being up in the night (good thing I’ve worked shift work for 10 years) and I will basically do anything to be sleeping. So having Jaxson in his room and hooked up to his BiPAP would ensure that there was no bringing him to our bed.

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The first few nights were LONG but we noticed significant improvement with each night. On night 6 we sat in the living room and watched Jaxson on the baby monitor fall asleep on his own. I literally had tears in my eyes watching it happen. Around the 1 week mark Jax caught on to our tactics and was figuring out how to manipulate us using the first plan. Of course this happened right when Alex was headed back to work for a tour and I was left to deal with 3 very brutal nights on my own. One night I got 2 hours of broken sleep, got up to a broken coffee machine (I literally stood there and cried), and called Alex at work saying I was done with this sleep training crap and he was coming back to our bed.  I must add here that we were warned about sleep regressions during this period, but I didn’t think they would be this bad. Luckily Alex talked me off the ledge and our consultant made us a new plan to follow. The new plan worked wonders and we started again to see significant improvement with the amount of wake ups he was having and his ability to settle himself back to sleep.

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I am VERY VERY VERY happy to say that after 3 weeks of sleep training Jaxson is falling asleep on his own and is able to settle himself back to sleep at night. On average we are still up 2-3 times a night (which is a miracle!!!) and last night I was only up once with him!!! The times we are required to be up are super super quick and easy and he usually just requires us to lay him back down, give him a quick drink of water (his BiPAP dries him out) and untangle him from the air hose and he’s back out for another solid few hours.

Although it was a long few weeks of sleep training it is probably the best thing we have ever stuck out. I know I shouldn’t be, but once again I am amazed at how quick he caught on to sleeping. He learned so many new sleeping skills in such a short period of time. I honestly thought the whole process was going to be so much worse than what it was because we had a couple good years of bad sleeping habits under our belts.

And now that we have so much more time on our hands with a baby that goes to bed earlier and SLEEPS you can expect more blog posts!

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That Tongue

Every single special needs parent is guilty of this. I am 100% sure of this, because I am guilty of the same offence.

We have quite a large following on our instagram account, and I try to post at least one picture a day to appease Jaxson’s followers. Ask Alex how crazy I am when taking a choosing a photo to post….. I literally take 10 photos in the matter of a few seconds, I then scroll through them and choose the best one (Obviously). I’m looking for a nice smile, or clarity of the photo, or for Jax to have a good expression, but I’m also choosing a picture that makes him look ‘good’.

But to be honest Jaxson quite often has his tongue out of his mouth. More so when he’s teething, and he ALWAYS does it when he’s deep in concentration. But it’s out some times and I never post those pictures because I just LOATH the stereotypes of people with Down syndrome.

So here they are. Photos of my perfect son with his cute little tongue making an appearance, because it happens and we shouldn’t be ashamed!

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The Job I Was Never Going Back To

As most of you know I have worked in EMS since I was 18 years old. I spent 4 years working as an EMT and 9 years as a Paramedic. The last 2 years I have been off car and I became a stay at home mom. Needless to say it was a HUGE transition, but so so so necessary. Becoming a mom was my ‘out’ from EMS, or so I thought….

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Everything changes when you become a mom. I know you hear it time and time again, but it is so very true. For me, becoming a mom and distancing from the sick world of EMS totally changed my entire being. I started to develop feelings, I started to actually care about people, and I started to relax. I can honestly say the last 2 years have been stress free even with everything we have been through with Jaxson.

The longer I stayed out of EMS the more I grew terrified of going back. The thought of bringing my job, a bad call, or stress from the general crap we put up with – home to my child at the end of a shift was all it took to convince me I was done with being on car forever. I was comfortable and at peace with my decision.

Mid June I got a phone call from my old company I worked with when we lived up north (High Level), I was offered a couple weeks of work to fill in for vacancies. It took me about 10 seconds to reply with a ‘yes’ and 10.2 second for fear and nervousness to sink in. I almost instantly regretted my decision but decided tough it out because the money was so good.

The weeks of worry and nervousness leading up to going totally melted away the second I opened up my books to study. Being out of a job like EMS for 2 years is pretty much an eternity. I was sure that I would have no idea what I was doing and that thought alone was terrifying. I soon realized that it’s like riding a bike. All the knowledge and skills were just stored away in the back of my brain. As soon as I started reviewing, everything came flooding to the front, and I felt as if I just graduated paramedic school.

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I was so fortunate that Alex and Jaxson were able to come to High Level with me. That alone was a huge relief as I have never even spent a single night away from Jaxson, pretty sure an entire week would have killed me! Alex and Jax spent their days in High Level visiting friends and chilling at base when we weren’t on calls or flights.

The first day I felt like a fish in very shallow water. It was hard because I had forgotten the small logistical things about the company and that was super frustrating for me. Not to mention they switched from paper charting to an ePCR system while I was away, so that in itself felt a little overwhelming to learn. Despite the things I had forgotten I had remembered some of the craziest small things like codes to the safe or station codes for our paperwork, which totally surprised me.

By day 2 it felt like I had never been gone, let alone taken a 2 year break! It helped that I was working with old colleagues that I totally trust and respect. They were all super patient with me when I bothered them about the dumbest thing for the millionth time.

Overall the week was a total success. I can honestly say I loved every second of being back in it, having the uniform on, going on flights and calls, and feeling like I was using my brain again. Would I ever go back into EMS full time? HELL NO! Would I ever go back into EMS on a semi regular basis? HELL NO! The thing that made my week of work so amazing was the fact that it was 1 WEEK OF WORK. There was no going back after. There was no getting involved or dragged into drama. There was no stress about logistical decisions made by others. There was no anger about being run off my feet (which I never was). BECAUSE IT WAS ONE SINGLE WEEK. At the end of the week I was going home to resume my life as a stay at home mom and a small home business owner. I didn’t care about anything other than patient care and it felt amazing! I will definitely be throwing that uniform on again in the future and going back north to work for a week and make some extra money. Maybe in a few months 🙂

Another thing that made the week so awesome was that we were back north, in the small northern town we called home for 3 years. We spent a solid week with our friends, drinking coffee at our old stompin’ grounds, visiting the small gift shops in the town, and eating at all the places we frequented so often when we lived there. Not to mention the weather was absolutely gorgeous, as it always is in summer in the north.

It was a wonderful week but we are happy to be home and settled back into our normal.

Let mom life resume!

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A Surreal Second Gotcha Day

Here we are in the place it all began 2 years ago. So surreal to be back here and celebrating your second ‘gotcha day’ Jaxson! You have no clue what you put your moms through 2 years ago, but we will never forget. 2 years later we are here reminiscing about your crazy adoption. The panic, fear and pretty much sheer terror we felt as we waited for our flight home to meet you. We were so incredibly shocked, and excited. We already loved you so fiercely and had no idea who you were.

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It’s hard to believe that we have been a family for 2 years already. Sometimes it feels like it was only a couple months ago it all happened, but at the same time it feels like you have been our son forever and ever. We were all destined to be together!

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Thank you for 2 years of being the perfect little guy for us. The love, light, joy and happiness you have brought into our lives is indescribable. Every single day with you is a blessing and we will never take a single minute for granted because we know how many stars had to align to bring us together!

Today we celebrate the happiest day of our lives, but we must remember you have another mother who is grieving for you. Never ever forget the selfless gift she gave you and us. While we gained a son 2 years ago today, she lost a little boy. I can’t imagine the pain and grief she felt as she walked away from the hospital after signing those papers. Let’s celebrate today but remember there is also great loss and sadness tied to this important day.

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So here we are where it all began. Love that we can bring you here to celebrate this momentous day. Let’s go for a swim, go see the sharks at the reef, eat dinner out and see some giant fountains that dance to music! Let’s celebrate Vegas style!!

Happy gotcha day

Love you buddy ❤

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