When everything went downhill J was averaging 3-4 bad nights per week. It’s been a dramatic improvement over the last year. He’s down to 1-2 bad nights a week and last few weeks been just 1 rather than 2. Unpredictable and we’ve been trying sleep earlier, sleep later, nap, no nap, weighted blanket, no blanket, sleep with him, not, think you get the point. Funny how it boils down to unpredictable but at the same time predicable. He had a bad night yesterday and today he fell asleep in the car ride to school. I let him get a short nap and carried him in since it was too cold in the car. The whole time I was holding him everyone would stare and comment. I get why people stare and understand why they comment. I vogued not to stare or make any comment next time I see anyone in any situation where most people will stare and comment. I am not bothered by the stares and comments but it got tiring answering, yes he’s asleep and had a bad night. I just wanted to stare at his beautiful face without being interrupted. I suppose watching him sleep is like the sunshine after the rain. Hearing him cry for so long is heartbreaking so watching him snooze away is my cure. I’m amazed how the other two kiddos sleep through it. I suppose the three of them are just a perfect match. Did I mentioned, I love watching him sleep! I’m able […]
I dropped him off today and as I said my goodbyes he put his hands out and moved those little fingers like his baby sister. My jaw almost dropped to the floor, he has never waved goodbye to me. I know it may seem small and in fact his baby sister does it on demand when I ask her to but it is a big victory to me. I was so happy I had tears in my eyes as I walked out. The little things that makes me happy. Hope he will do it again tomorrow.
How was Halloween you wondered? A complete no go. He didn’t want to leave the house for some reason. He is usually he’s fine when we are outside especially for a walk but not on Halloween. After bundling 3 of them up and into their custumes we managed to start the treat o treating journey. He lasted for about 3 houses before we had to dig into the treats for a bag of chips. This whole time he wasn’t even walking but sitting and whining in the wagon. We tried taking him out but he was just not having it. My sister ended up taking him home. However he didn’t want to go home and guided her to the park. Turns out he wanted to go to the park. When we go on walks we typically stop by the park. He was likely upset because he didn’t want to leave his toys at home and on top of things we didn’t go to the park. So he walked her to the park and went down the slides even though the slides were all wet from the rain. Got his custume all wet but good thing we got backup custumes for some sibling photos after. Tip of next Halloween, stop by the park first and get his slide fix before trekking on. The big one and little one had a fantastic time treat o treating and got a boat load of candies for me to consume. I pulled a half Jimmy […]
His social interaction has improved quite dramatically. Lately he’s been wanting to play with us way more. He enjoys pointing at letters, numbers, colours or shapes and have us say it out loud for him. Tonight he spelled BINGO again and took the B away and put his hands there to replace the letter. We didn’t understand it at first but picked up that he copying the song where they clap or make a sound instead of saying the letter B. He is such a smartie pie. It melts my heart to see him interact with us. It is just perfect. During the day when big brother and little princess is up we have to divide up our attention but when they sleep we can concentrate fully on him. He seems the happiest after dinner and before bed. We get the happy, giggly sweetness from him at that time. He understands so much now and compared to a year ago this is day and night. He is a year older but I think because he can communicate better his frustration is less. Does it get easier? Yes, in a way it certainly does. We no longer have to guess if he wants this or that since he points and directs you to the area but there is still some guessing involved especially when he is frustrated. As he grows his wants increases as he is more aware. He wants more chips, more ipad time and more snacks. His voice and […]
My 1 year old is growing up and she is such a smartie pie. She is learning to communicate by pointing and leading our hands to where she wants to go. It was not long ago maybe 6 months or so that JB started pointing and leading us to where he wants to go. It was the best thing ever as that kind of communication is much better than just endless crying. I thought to myself very soon she will catch up and exceed JB. It sadden me a bit when I thought about it but it is enviable that will happen. He has a delay in communication among other areas and truly there is no need to compare where he is at with his younger sister. He will learn at his pace and as long as he is happy so are we. He has come such a long way since his diagnosis and I am super proud of all his accomplishments. I think I will likely run into these pitfall moments but I will snap back into perspectives and feel gratitude of what we have. Are the struggles real? Yes. Is it challenging? Of course. As some things gets easier other things gets harder, but at the end of the day I am so grateful I have a beautiful sweet boy to force some hugs upon and steal some kisses from. He is happy for the most part and his silly giggles makes any hardship melt away.
Been a very good week and think his pee strike is over. He goes pee when we take him and been having next to no pee accidents. Poo on the other hand is still the same ole same ole. Actually he hasn’t been smearing or playing with his poo since the last incident I posted. I think we can say he is not a poo smearer, thank goodness. If he is we will have to deal with it but with my ocd it was not entirely fun. His sleeping been good, think we only had 2 days of waking up super early or should I say late at night. Funny how I think 2 days is a good week but 2 days is better than 3 or 4. It is all about perspectives and I like to count my wins. I think what has improved dramatically is he no longer bawl his eyes out when he wakes up at 3ish 4 am. He seems happy and lays in bed for a while playing and when he is ready he goes to the gate and hubby goes down to start the day with him. I can pretty much confirm he is a stripper. We have caught him way too many times and he seems to like to take off ALL his clothing. As I mentioned, our school near us has a diagnostic kindergarden that I enrolled JB for next year. Everyday as I walk my older one to school I see […]
We were at my sisters for Thanksgiving and he was singing I though Old MacDonalds but I guess it was BINGO because he spelled BINGO. I was so shocked because this was the first time I witness him spelling a full word. I didn’t know he can spell a 5 letter word. I was speechless and so proud of this little monkey. He is honestly so smart and I look forward to seeing more words from him. We been having such good interactions lately with different songs and he seems so engaged with me. I absolutely love these moments where I ask for a kiss and he gives it to me. We been settled down with a good routine of putting away his shoes when we come home and washing hands. Love how he puts his shoes so very neatly each and every time. I don’t even do it myself every time. I think he will do alright if we teach him more life skills which we are working on. He loves to buckle his own seat belt and we let him do it every time. Think that boost his self esteem and gives him a bit of control. Also we love his smile when he is able to do it all by himself. My baby is growing up and although it is bitter sweet for me, I am very happy to see him do so many things independently.
I started following a family with an severe autistic boy who is also non-verbal to get a glimpse of how life is in the teenager phase. The father wrote when strong is the only choice you become strong. It is absolutely true! Before JB’s diagnosis, when I hear other children having so and so medical problems, I use to think and say wow you are so strong. I still do, but I now understand when you are left with the only option and that is to be strong, you become strong. I was left in tears when I read the father’s apologies to his other two children. Like them, my middle child has autism and he has an older and younger sibling. I often feel we are robbing their time when we are spending so much time caring for JB. It was nice looking at their family but at the same time I can’t help but to wonder will that be us 14 years down the road. Their struggles are even harder as you are now talking about a full size teenage with a lot of mighty strength. Today we took JB for a dentist appointment and typically the husband takes him but today we all went. I witness a strong boy fighting very hard not get his teeth cleaned, my husband struggling holding JB down, the hygienist trying her best not to hurt JB with him moving around, me trying to comfort him and fanning him down as he […]
When we had our first child the in-laws pressured their ways of parenting a lot to a point it got out of hand. Not much changed after my second or third child. I mean literally when baby girl was born the in-laws took matters to their own hands and cut JB’s hair because they thought it was too long. Let’s say it was so hideous the hairdresser had to comment. I’m sure along the way they were likely reminded of the hardship of raising 3 young kids since they had 3 of similar age gaps but I really think JB has changed them. Clearly I know JB’s diagnosis has changed me so maybe a combination of me changing and them changing. They are more understanding and no longer use the guilt trips they use to if we can’t make it over. If we can’t go over, they come to us. They don’t come empty handed but literally do a big part of our shopping for us. They bring fully prepared food with all the fixings, snacks and fruits. My older loves fruits and this is good since there is a balance of healthier treats. When the house is a bit too overwhelming, they clean too. What I am most thankful for aside from the food is their love towards my kids. It warms my heart seeing them spend time and interacting with JB. Their visits usually comes along with help me fix this or what is this letter about but […]
7 years ago I married my best friend and my soul mate and that was truly one of my best decisions ever. Funny fact, that previous line was stolen from my husband’s wedding vows. Together we build our first home and welcomed 3 beautiful children. Having children really changes one’s relationship, well at least for us. The sleepless nights can really get to you especially when you are outnumbered. The added stress of one them with autism most certainly tested our marriage even more. Despite the challenges, I got to know my husband even more with our son’s diagnosis. I never thought I could appreciate this man even more, but you can. The love he has for JB is so heartwarming to witness. I’m truly blessed to have found someone who I call my husband and my children call daddy, who loves them just as much as I do. The love we have for our children, like all parents is indescribable. I am still unsure how you can love someone so unconditionally but you when you become a parent you will understand. Even on sleepless nights and exhausting days, no matter how frustrating it gets, this husband of mine almost always outperform my expectations. lol yes I’m realistic so I used the word almost always. There are days where the exhaustion gets the better of him. We’ve all done things where we could of done better. I’m going to lie and say we are perfect parents because we are not. […]
When an Access 2 cardholder presents their valid Access 2 Card at any participating venue partner, their support person receives free admission; the cardholder pays regular admission. At CN tower kids under 4 gets in free which means JB is free and I am free as well. A friend gave us two tickets which means our family of 5 got in free. I figured the boys can experience it since we are not paying a dime. The line up was extremely long but we split up to sped things up, the hubby lined up for the free passes with JB while I took Mase and baby girl to check out the line to go up the elevator. I got the the front where there is a timer saying it will be 2 hour wait. I asked the attendant there if this time is accurate and she replies yes it is very. I was extremely hesitant but decided since we drove all the way downtown and parked might as well see how it is since hubby was in line anyways. It was a small trek before we got to where people were standing and that was pretty much where you take a picture. The attendant there said about 45 minutes. I thought 45 minutes is doable since we are here anyways and it is much better than 2 hours. By the time we took the photo, JB and hubby was able to join us. Surprisingly it wasn’t too bad for JB. […]
I can’t believe how fast the year flew by and you are now a one year old. I know it is not easy for you when our attention is split since you got two older brothers. JB like you, requires our full attention most of the time and there are times where you get neglected a bit. I’m sorry for delaying your bedtime when I have to put your big brother to bed. I hope you get the extra bonding time with him since you are stuck with me putting him to bed. I do think you kind of enjoy our hooky pooky stories every night, don’t ask me why but your big brother seems to be interested in this racing story for the last little bit. I think you will grow up to be patient and caring just like your big brother. The love Mase has for JB is undeniable and so sweet to watch. I know it is hard for you when JB doesn’t share his toys like Mase do, but with time JB will play with you just like how he plays with Mase. Although JB does’t express his love at this moment, I know he loves you dearly. The little interactions you get together before he runs away due to your violent nature of claiming everything is sweet to witness. His kisses and the occasional willingness to share with you is very precious. We are watching your development closely since your brother has autism. I even […]
This tip works pretty well for us most of the time. I give warnings so JB is aware I will be taking a toy away or we are about to transition into another activity. I pair it with a countdown of 5 and time it so he is just done with whatever he is doing. If it is a puzzle, I let him finish the last piece then do the countdown. Most of the time this works like a charm but of course there are times where he refuses. We keep trying it and it has become a routine for us. Another tip is being consistence and actually following through on what you say. If you want to transition to let’s say bed, you want to follow through so your child understands it is time to go to bed. A child learns very quickly what they can get away with. JB often resist going to bed but I repeat myself and tell him it’s time to go. I also give him the choice to take a few toys up with him after the warnings and countdown. For us, dragging him up is the worst possible scenario as he cries bloody hell. It’s as if he has an itch and it must be scratched otherwise he just can’t sleep. In order for the itch to go away he must willingly walk up himself.
Tomorrow wraps up week one at Geneva Centre. He is only doing two weeks there so we are almost at our half way mark. Communication has been very smooth and staff seems very nice. I like how they travel near and far to everywhere for him to get more experience. It has been tough this week with 3 days of no naps at home but today we got him to nap so it was a bit better. I wonder if it is the new environment or is he ready for dropping the nap? If he is ready, why is he so grumpy then? Or is this just the transition where he doesn’t want the nap but by 4:30pm he is just too exhausted.
Unsure why this boy was so sad today. Perhaps it’s because he slept for only 5 mins and woke up ready to pounce at the world or could it be his new camp? His camp councillor said he had a great first day and everyone loves him there because he is the youngest and so cute. However, new environments terrifies me more than him. I hate changing his camps but the previous one ended for the summer. I don’t get it, what kind of summer camp ends August 10? You have almost a full month before school starts. On the bright side its 10pm and he is already asleep. I recorded him today as I watched him for a long time go from sad to the saddest person alive. I’ve witness this before and find it so puzzling as I can’t seem to explain why he is so upset. I actually found him sobbing on his pillow silently. Something has to be bugging this beautiful child of mine for him to be sobbing. It kills me literally watching my precious child sob in silence. Are you in pain? Do you feel there are a million ants crawling up your body? How can mommy help you? The feeling of helplessness is such a deep pain that is indescribable. What I would do and give up just to take this away from you my love. I am fully aware that I am a worrisome mom and most of the time I overthink […]
It’s bittersweet when your child grows and although I want my children to grow, I just want them to grow very slowly so I can enjoy it just a tad longer. Yesterday JB didn’t nap and I had to take him to pickup Mase. We were cutting it real close in time so I had to rush which was my mistake number one. Never rush your autistic child. He wanted something and I took a moment to try to let him find it, but he was frustrated and angry. We trekked on and when I took him out of the car seat he was past the point of no return and I immediately regret it. Mase summer camp was only 7 minutes away and I thought that is a short ride but boy was I wrong. He was even more angry and was not having it. Again I gave him a minute to calm down but a minute was not enough and I had to carry/wrestle him in since I was already late. The struggle was so real and as I’m reflecting on it now I realized I was frazzled. I wore a dress which is mistake number two. You can’t wrestle a strong child with a dress on holding 2 toy cars, keys and a wallet. Mistake number three, never hold a million loose items. He threw a toy car and as I picked up the toy while holding his hands to ensure he wouldn’t run away in the […]
JB been doing really well taking turns with us meaning me and hubby only. The issue is he got a younger baby sister and older big brother that likes to play with toys as well. I know we need to work on the social skills of taking turns and sharing and I’ve been trying that at home however I’m in a dilemma because this causes him to go into a meltdown. Most of the time we are able to distract the older child with something else and they all seem happy but with the baby sister she clearly has little reasoning skill and don’t understand sharing. You will see JB grab all his toys and run to corner to play alone rather than have his sister pull his hair and steal his toys. Can’t say I blame him, but he can be mean sometimes and push his sister or grab the toy back more rough than I like. So my question is: Is sharing really caring? I’m leaning towards no. If he has to share with her, he gets very angry and likely won’t like her as much. Think I’m going to try the approach of not making him share his toys with her so he can like her a bit more. What are your thoughts? On a side note, he didn’t want to nap today so hoping he will sleep early to catch up on some snoozing time.
If you haven’t been reading up on our potty training posts, we started training and he is doing amazing. The only accidents are number twos. He hasn’t done his number two business for 3 days and usually he is a daily goer and pretty predicable. Yes yes, we keep track of their (our kid’s) daily washroom routines, it’s just a parent thing. You know some start a conversation about weather but we discuss our children’s poo. Back on topic, he pointed down there and the hubby took it as a request to pee but when he sat down, three days worth of poo came out. I was so so so excited I wanted to run down and hug him but unfortunately baby sister needed me. I’m going to call that a request to use washroom. Until tomorrow and hopefully he will tell us he needs to use the washroom. I wanted to give him the world for being so smart. The little things in life that excites me lol. I truly love him to the moon and back and back and back. My little baby is growing up and I’m the proudest mommy in the world. Last week was bad with constant crying, waking up at 3 am and 5 am and downright frustration and anger. Today was the same as he seemed so upset. Had to resort to taking him on walk and park to calm him. He was still angry after a shower but he seem okay after […]
The husband had to wake up at 5am this morning because JB was screaming bloody murder at 5am. Thankful the big one slept through that and the little sister didn’t take forever to go back to sleep as usual. All in all the husband was the real loser with only 4 hours of sleep. Why did I titled this as perspectives? The husband’s sister came over today and when we told her about it she was shocked and said oh my but my husband replied it’s better than waking up at 3am. We all laughed but it is so true. As sad as 5am is, it is much better than 3am and since we had a 3 am just a few days ago, 5am is much much better. Everything in life is about perspectives. I have learned that our bad night/day could be someone’s very good day/night. Comparing isn’t the key but in reality it makes me feel that better in a sense that our situation is manageable and we can work through it. Hope is a very powerful thing. I can only hope tonight is a better night. Sleep deprivation is real and I must give credit to the husband for still being so patient and loving. It melts my heart when he holds JB up close and cradle his head telling our son how precious and how much he loves him. As much as sleep deprivation is real the love a father has for his son is truly […]
While I’m extremely happy he is doing better for sleeping, I still feel sad when he has his bad nights. I know, everyone has their bad nights from time to time but this child of mine breaks my heart when he cries the way he does at night. What can I do to help you my poor baby? One day at a time 🙁
It’s been a while since I posted an update on potty training. It’s started off rough with many accidents but I’m super super proud to announce JB had zero accidents and 8 successes today. He clearly knows as we don’t even need to sit on toilet for long before he looks down and pees right away. We celebrate each success and I’m so happy of his accomplishments. It took a lot of hard work and there’s still so much to learn but this is such a huge victory for him. He is such a smart cookie, I love him to the moon and back.
I have lost count of how many days this is now. The good news is he can now hold in his pee and no longer doing spit of little pee. Today for example, he held his pee in for over 5 hours. I was honestly getting worried thinking maybe this is too intense and causing him to hold it in. He had a success in the toilet with both pee and bm. After his nap we noticed his diaper is dry and continued the training but unfortunately after getting off toilet for less than 5 minutes he had an accident. Overall stats for today is still awesome with one success and one accident. In JBville, that is a good day. Tomorrow is a new day and the training continues.
You are an autism parent when you get all emotional and proud when your non verbal child uses any kinds of word. Yesterday, he counted out loud one to eight. It happened all too quickly and it didn’t sink in till the husband was all excited and asked if I heard that. I got teary as I cheered him on. Today he was done dinner and as the husband walked away he said “all done”. It was so clear and no slur or sounds like all done. Husband thought it was Mase who said it but when I asked did he hear that, he couldn’t believe that was JB. To be honest, I’ve come to terms that if he is non verbal then he is okay as long as he can communicate his needs to us and more importantly happy. The days of extreme frustration over something so simple such as water is over. He now takes matters to his own hands and get his own bottle or guide me to the fridge or cupboard. You have no idea how thankful I am with this accomplishment. I am looking into sign language but little victory like yesterday and today makes me feel speech might be in the near future. I sure hope you do speak my love but if you don’t that’s ok as long as you are happy.
Woke up super early today and started training right away. Yesterday was an amazing day with 4 successes. Today was a different story. Only 2 successes today with 5 accidents. We had our senior behaviour therapy support come in today to help. I read her notes and she wrote parents are taking JB to washroom consistently without IT’s (instructional therapist) help. I guess the other two IT from Tuesday and Wednesday reported that we are taking him. I thought to myself, why are we doing so much work when we paid extra for them to come into our home to do this. I spoke to her about modifying the program as I felt it is too intense. She listened to our reasoning and what we have been doing. She agreed to modify it. So the plan was when he has a success, he moves up to next level but if time has lapse more than an hour since last pee (accident or pee in toilet) we move back to more frequent washroom breaks. At the one and half hour point, it is back to 5 minutes on and 5 minutes off. That way we increase the chance of catching a success. I think what contributed to so many accidents today was the fact that this therapist got him to drink much more water than us and the previous two ITs. I noticed it as she gave him water and even commented on it. I said if it was me, he […]
Boy toilet training is hard. It is even harder when you have a routine that is so intense. Toilet training Mase was much more relaxed but likely because he was the only child when we trained and now I got 3 kids. Today was much better we managed to get 4 successes on the toilet and one of them is a bowel movement. The little things in life that gets you excited as an autism mom is funny. Not sure if there is a correlation but last two nights been bad nights in the sleeping category. WELL sleeping is always a struggle, but not sure if it is in my head or not, I feel he is crying extra hard these two nights. I get it, if I’m exhausted training him, I can’t imagine his exhaustion. He must be thinking, women that is enough you are torturing me. I think he is starting to understand the concept. We have started toilet training previously before the diagnosis but it was unsuccessful. However this time around, he was watching his pee as he was doing his business on the toilet. He seems aware with the bowel movement too, which I think are all good signs that he is indeed ready for this. I find it hard for my butt sitting on the toilet for 10 minutes let alone again and again all day long. I asked the hubby, why are we doing this, we are torturing the poor baby? Is it really […]