HappyStruggles

Jayden update: 2 years since diagnosis

We got the official in November 2016 so its been a tad over two years. Jay turns 5 in about 5 month.

Potty training:

I’m proud to say he is potty trained and still wears night diapers. We started potty training him fully at age 3 and at that time if I’m honest I wasn’t sure how successful we will be. This potty training journey has its up and down and still does but I’m so extremely proud of this little fellow. For starter at least there is less poo smearing mess to deal with. That is a win in my books even if it is one less a day but now this boy just gets up and goes himself. I am sorry that I underestimated you, thought we will be cleaning poo with toothpicks for so long. I am so thankful beyond words can describe.

I’m unsure why he is refusing to pee some days but when he does we offer him more water and bring him more frequently. Also keeping an eye out on unusual behaviour.

Eating:

He’s always been a good eater but the past few months he would rotate in a cycle of food strike then eats very well and back again. He clearly has his favorite but getting him to eat it at school is just a different story.

School:

He finally got a full time teacher who happens to be the temp teacher. He is adjusting well there but I would pretty much say he doesn’t eat lunches there. Somedays if the moon and stars align all perfectly he would eat a bit. It is a DK class which stands for diagnostic kindergarten. There was supposed to be a maximum of 8 kids but they have 9. Aside from having more kids then they are supposed to have there are a few in there with more challenging behaviours. It gets very overwhelming at times and even the teachers admit themselves. This program is only available for 2 years at our school but that’s another worry for another year. I’m still holding my reservation about this for time being. Aside from food strike, he also goes on pee strikes while at school. Good thing is he ends earlier at 3 so I take him home and use the washroom right away and give him food.

Communication:

He is non verbal and although I still hope he will speak, I’ve come to terms with he may not. I dream of hearing his sweet little voice call me mama but I’ll take any form of communication. We fought hard to get into this program the government has called Assistive Device Program (ADP). You have to get a referral and meet certain requirements. They are extremely picky about what they need to see in order to qualify to advance to the next step and it has been very frustrating, more about this in a more detailed post later. We finally got the device and ended up going with Proloquo2go. Through all our hard work, Jay is now able to communicate via this device. It is still very new for us but big plans on working on this in the hopes of easing his communication frustration.

Therapies:

We dropped the home visit occupational therapy but still doing speech and behaviour therapy (BT). He goes to speech biweekly and BT twice a week.

Ontario Autism Program:

After about 2 years of waiting we finally got the approval for some funds. Is it enough, absolutely not but any help is good. More about this in another post.

Struggles:

We still struggle with sleep but he has made improvements. I’ve lost track of how many bad nights he has in a given week but the biggest change is he doesn’t wake up at 2-6 as frequently. I’ll start tracking again to give a more accurate update on sleep later but I would guess it is about 1-2 times a week. On nights he wakes up at 2, 3 or 4am he would actually stay up until after lunch and some days make it till 6pm the next day. I’m unsure how he does it but he does.

The unexplainable sadness is still there on a daily basis. Somedays it is constant where it would be hours upon hours of sadness. Most of the time we can guess why or what got him upset and there are times where he is extremely happy and full of giggles only to follow by extreme sadness. His cries are heartbreaking not just to me but those who come in and observe him. Maybe the therapists who comes in sees the sadness in my eyes as we’re watching him struggle. The improvement is I no longer sob with him when he sobs, not that it is not sad for me, it is excruciating painful but I’ve learned to control my emotions. I wish there is a better way of communicating why he is sad and would do anything just to understand his little brain.

Noise, he is much better with this now and can even tolerate his screaming sister. We give him warnings when we vacuum or plan to blend or make loud noises. His sister makes sudden loud screams but he doesn’t get affected every time like before. That I supposed is a win rather than a struggle.

Toys:

He been practicing on how to play with toys in a more practical way rather than just flip it over and spin the wheels. We do both, he still plays with it the way he wants for sensory input and we let him. Who’s to say the right way is having the car go upright? As long as he is happy, I am too.

Jay is very good at matching and still obsessed over ABCs, numbers, shapes, colours and cars/trains. He knows how to fully strip down to buck naked in a matter of seconds and starting to know how to put on his own socks/shoes, hat and scarf. He can climb on your shoulders without you even realizing he is doing it. He loves to jump and be around people. It may not seem like he is engaged but he loves the socialization of having people around him. He loves cuddles, which at one point I thought he hated. Or maybe he is just tolerating my cuddles since I love them so much. He uses a blanket now and this is something he hated when he was younger. I always want to put a blanket on him because it is just way more cozy with one and was sad he didn’t want it. Pleased to say this change made me so happy. Oddly enough parents usually don’t want their kids to like sweets such as ice cream and cake but when he refused it, it made me feel that he was missing out. I know, who’s to say that he is missing out if he doesn’t like it but he does now. The other day he ate so much cake and as he was eating I was over the moon thinking yay he finally likes cake. I know I’m odd. He understands the concept of biking and I have no doubt he will learn how to bike. He loves to swim and we love to take him as that is his happy place.

Me:

I’ve become a much better person and understand that there is a story behind everyone. Just because I don’t see it doesn’t mean the person is not struggling. I’m more kind and I love that. The future is still unknown and quite frankly I still worry about Jay but I’m learning everyday we explore this journey and still take my days one day at a time.

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