Eventful dinner on Friday as we went out to eat. The husband ran late which got me anxious as Jay and his food is a MUST. He just simply don’t understand that we will feed him soon. I prepared for it slightly with a bigger snack during snack time and offering a smaller snack after I picked up the other two. Guess it didn’t cut it or maybe something else was bugging him. He recently started this scream that is nearly glass shattering when he is super happy or sad and dinner on Friday was the sad moment. The wait was 1.5 hours so we managed to squeeze into a tiny table at the bar instead. He wasn’t having it started screaming so loud I think the restaurant paused for a moment just to see what’s going on. The manager quickly came up to us and asked if there is anything he can do for us. It was very kind and I appreciated his gesture a lot. He didn’t come by to look for answers as to my my child was behaving the way he was but just offered his help. The simple, is there anything he can do for us and that was it. We quickly ordered the kids food and proceeded to settle down with crayons and iPads. The table was just so small for all out plates and it was tight seating 5 people with two high chairs. Jay wasn’t the happiest camper and kept getting angry […]
Today at behaviour therapy he had a bm in the toilet. This is his second, with the first being last week. It could be that we just caught him at the right moment but regardless it is a good win as I celebrated like it was my birthday and his therapist did the exact same. The new occupational therapist suggested that if he has a time he usually does a bowel movement we can bring him every 15 minutes during that timeframe. Hopefully we can catch more successes and reinforce it with high rewards so he can do it more often. I’m confident he will get this eventually because this child of mine is such a smart boy. Got a new therapist and I think I like her. I’m feeling pumped and will try new all the new tips anyone has to offer.
Baby girl had diarrhea on Monday so I kept her home. It wasn’t too bad taking her to drop off and pickup as Jay wasn’t fussy thankfully. However I kept baby girl out as I ran errands all day and she only had a short nap at 9:30 so by 3 she was ready for another nap. Only issue was this is also the time Jay normally poops. I took him washroom and decided to just take my chances and left him in the basement while I put girl for a nap. She struggled but finally went down and that’s when I heard water. What does water mean??? As I dashed down to see if he is ok I got a woof of poo smell. He attempted to use the toilet after the fact but instead of cleaning he made things 100 times worse. He took off his pants and underwear and attempted to throw the poo down toilet and flush the toilet. I kid you not, it is the biggest mess ever. The trail of poo is from the whole toilet (I literally mean every single square area of the toilet) to floors and walls and sink and stool to turn on tap to light switches. If there are poo horror movies, this will be a scene from it. I wasn’t mad at him as he is clearly trying and also showing signs he understands but let’s just say spending the next 45 minutes sanitizing and bathing him wasn’t […]
J where do mommy even start? You are such a beautiful soul and when you smile you light up my whole world. There is something about your smile that just makes everything better. I want to wish you a very happy birthday and want to let you know words cannot express my love for you. Mommy is so sorry and wishes there’s more she can do for you when you get into your sad spells. Watching you hurt yourself brings tremendous pain to me more than you can ever imagine. As you are growing, so does your strength and I know those punches must hurt. Whatever frustrates you so much for the need to hurt yourself must be hard. Mommy wishes she can take that away from you and if she could, she would do it as fast as a heart beat. Sometimes, I’m likely the cause of your frustrations because I’m not understanding your way of communication. Please know that I’m trying very hard and please be patient with us. Being non verbal is difficult but together we will learn and find a way of communicating even without words. You’ve come such a long way and I want you to know how very proud we are. Turning 4 means you start school this fall. It’s a big milestone and I’m not sure I’m ready for this one. I know you will figure it all out like you always do and I fully trust that you will but there are […]
I went into this meeting thinking what if they don’t think he needs diagnosis kindergarten and feel he is fine at regular class. As I was voicing my concerns to hubby, he says how on earth will they think he doesn’t need diagnosis kindergarten and I agreed. However, I put up my fight stance regardless in case I need to fight. I do think I was overthinking especially after the fact. The meeting went well and essentially the consultant is in the same page and agrees with us he needs the diagnostic class. This is what I wanted but at the same time the reality is starting to kick in. That my child will not be going to the regular kindergarten. Is it okay, sure, but it is also sad to me. I’ve been emotional all week because he’s been having a bad week with consistent sadness and crying. Something has to be up since he is refusing to eat. I initially thought I’m sad because he is sad but upon writing this it made me realized I’m sad because he can’t go to regular kindergarten. I really thought I’ve came to terms with his autism. It’s been over a year since the diagnosis and I haven’t bawled for almost a year. I’ve had sadness and tears roll down my eyes when the struggles get hard but full on sobbing, I thought I was done with that. Boy was I wrong. I think it didn’t help since I also filled […]
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 couldn’t get him to nap yesterday so it means an early night which is good because it frees up our night. Typically we fall asleep with him when he sleeps and that’s the night. Since he slept so early we took advantage of that time and caught up on paperwork. How exciting is that? I’m laughing as I’m writing this because on our seldom free night together we did work. As sad as it sounds, it was good. I fully anticipated JB to get up at 3am since he slept so early but the little bugger had the best night of sleep in a long while. Almost 12 hours was just what he needed to catch up. Well let’s be honest, I’m not entirely sure he will ever catch up but getting a good sleep once in a while will recharge him for a bit. One of the hardest thing is watching him cry for hours as he is up in the middle of the night. You really want to help but you are just too exhausted night after night. Sleep deprivation is real and it sucks. Sleep is everything for a toddler because if he isn’t well rested it affects his whole day. Its just a vicious restless cycle and everything tumbles from the lack of rest. I’ve had to cancel 2 weeks of BT already. The one week I decided to bring him, he puked all over and it lasted a good 15 minutes before getting called […]
It’s been such a long time since I made an update. A lot been going on and we’ve been just overwhelmed. Kids been sick and sick and sick again. I swear it feels like they have been sick for almost a month. JB got better and then he is sick again. The same goes for baby girl, she just finished a round of antibiotics and looks like she has an eye infection. How is that even possible? JB probably has the worst string of bad nights due to his congested nose. We tried everything we can think of from more pillows, to diffuser and oils, vicks rub, tiger balm, minty steamy room and the good old humidifier but the poor bugger is just so uncomfortable. He simply does not do well with with a cold and is the last person I wish get sick in the family. We will trek through this and get to better nights. Aside from the madness with sick kids, my mother in law was diagnosed with cancer and she recently had surgery. I’ve discovered that the wait to find out anything is really the scariest part. We are still waiting to get confirmation on if the cancer has spread to other areas. The good news is the operation was successful and she is healing well. Honestly health is so important. We been trying to visit more but I think my three kids cause more noise and chaos at this point. The hubby thinks the kids […]
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.
We’ve lost count of how many nights it’s been since a good night. This has got to be the worse string of bad nights ever. He typically up 2-6 am and some nights he is crying for the full hour before resting for a bit only to continue the crying. On the bright side he doesn’t demand to go downstairs anymore and lays in bed playing at first and then crying when he is exhausted and tired. I suppose so many bad nights gets to you and the hubby tapped out at 8pm and here I am taking over. When will this child sleep? I’m exhausted and have a long night ahead of me. We’ve tried everything we can think of but he still wakes up for hours. Hope this bad night streak ends tonight.
My Sunday funday was full of love and a tad bit of tears. J was getting up from his nap so he was laying there and his big brother Mase joined him shortly after. I was full on expecting J to be annoyed that his brother is right next to him but he didn’t seem to mind at all. J started speaking “his language” and Mase turned to his dad and said “I wish I have autism so I can communicate with my J”. My hubby replied, we want your brother to speak so he can communicate with all of us. Isn’t that a better wish? As I heard this a few minutes after, I couldn’t hold back a tear or two as it was just a sweet moment. To hear how much my older one wishes to communicate with his brother is both sweet and sad. It is inevitable that growing up with an autism sibling has its challenges. Being non verbal is not just hard on my son and us as parents but also for his brother. Mase desperately want to communicate and play with his brother but most of the time, it is a one way street. I need to implement what I learned in Hanan’s more than words so Mase can understand that communication doesn’t need to be with words. Gestures is a form of communication too. No doubt it’s harder and many times, a guess and guess again game but at least there’s some clue […]
I knew it would be a bad night and as much as I tried to make it more comfortable for him he was still up all night. It didn’t help the husband turned on the diffuser for just an hour instead on continuously on. JB was probably up around 2am and stayed up all night. By 8am, he was just exhausted and every little thing led to full blown crying. After calming on the yoga ball, he laid in bed and fell asleep at 9am. Guess no school today for him and hopefully this nap will do him well. As I was going to refill the diffuser with water and oil this morning, I discovered the husband must have just turned it on for 1 hour. The buttons on the side shows 1 hour, 3 hour, 6 hours, or just on. I bet he hit it once not realizing he has to click it several times for continuous on. It is not the smartest button function but I should of reminded him to check to ensure it is pressed enough times to be just on all night. Too bad, because if it was on, I do think JB would of slept better. Beginning of week and hope the worse sick day was yesterday.
Baby girl was sick a few days ago and now it has been passed on to JB. He woke up from nap today and was not having it. When he is sick, everything sucks. He is likely the most dramatic boy ever when he is sick. I get it, it is not comfortable and he just doesn’t know how to work with the discomfort. Can’t blame him, I am miserable when I’m sick. I’ve been wanting to write about this diffuser for a while. I got it on Amazon and the seller had excellent customer service. I don’t typically write reviews unless it went horribly wrong or so impressive. I was really impressed with how they handled my email when I contacted letting them know the diffuser stopped working after a few days. Back to the diffuser, I really didn’t need all the jazz as long as it was good enough to handle the night. I mixed in eucalyptus, mint and just started incorporating lavender. It seems to do the trick to clear up the nose so at least they can sleep. Tonight, I got extra worried and added a hot cup of hot menthol ointment. What I do is boil hot water and add a few teaspoon of menthol ointment and leave it on top of the vent. It cleared baby girl’s nose within a few minutes to allow her to drink milk so clearly it works. She fell asleep quickly but looks like JB is still struggling. At […]
For night duties, I usually put big one and little one to bed while the hubby takes care of JB. Since JB sleeps so late, I’m usually able to spend some quality 1:1 time with him since the other two are asleep. However the hubby is typically the one to take him to bed. I do it from time to time as needed and each time I do it I appreciate my husband more. Its not easy watching over him so he doesn’t run out of his room or take off all his clothes. With the sleep sack, luckily he hasn’t defeated the zipper yet so removing clothes is not an issue right now. JB gets really happy before bed probably because both the hubby and I can give him quality undivided time. Being too happy usually means he has harder time to settle in and also sometimes lead to mad crying episodes where he just don’t want to go bed. Being non verbal is frustrating for him if he just wants something downstairs but unable to communicate that to us. We are trying to calm him down and get him ready for sleepy state but that boy has a mind of his own. He jumps not only on the bed but also on you. I mentioned he is starting to be more affectionate which is perfect but comes with some bruises. Seeing stars is a common occurrence if you are not careful. He doesn’t mean to hurt us but […]
It’s been a while since I made an update. We have started a Hanen Program called More Than Words through Adventure place, the City of Toronto’s speech services. It has been great and but a bit repetitive for me since I just finished the DVD. The book and DVD is available through Hanen’s website or even online on Amazon. It is also available at your local public library which is where I got mine. It teaches you ways to communicate with your child and you watch videos of other families as real life examples. More on this later but back to my medication for the day. Yesterday was a rough night where the hubby was sick so I put JB to bed. I was planning for an early night to catch up on some sleep but let’s just say there was very little sleeping. I use to put JB to bed too but its been a while since I’ve done that. I completely forgot how exhausting it is. He plays and jumps and moves around before settling in which is fine if he doesn’t hurt me. I think I got two good whack where I literally saw stars. They were more like sparks of light but I see why people say they see stars. No jokes this boy is gaining strength by the day. My energy level was drained out so fast I think I fell asleep before he did. He didn’t sleep till midnight and after he slept, my […]
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 […]
New challenges shouldn’t be a shock to us but this one is a tad bit harder to battle. He been taking off all his clothes a lot more lately especially at bedtime. It is a constant no, not taking off clothes. Our behaviour therapist team suggested giving him some naked time to try to satisfy his needs. We are also to start journaling his clothes taking behaviours in the hopes to find a pattern. Feel pretty confident we are going to add investigator as our list of skills to our resume. If my job don’t work out, I should have enough experience being an investigator I think. Well if you all know someone who is interested in hiring an investigator, contact me. We been giving him 10 minutes of “free” aka naked time after bath but so far haven’t noticed a decrease in stripping behaviour. The only good thing about this is he seems to like to do it at home only for now. It is kind of hard if he strips when he’s outside. Everytime he strips down, I recall all those books I read where the family finds their child at a favourite park completely naked. It gives me chills because I could see that be us. For now, we will continue observing one day at a time.
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.
We were just hanging out like any other night and play learning with Mrs. Potato Head. You then hear him sing head and shoulders knees and toes. I was overjoyed beyond words. In fact, I think I was close to tears. He was pointing to the Mrs. Potato Head’s head then shoulders, knees and toes. He even pointed to the eyes, ears, mouth and nose. Of course I didn’t have my phone to record all this and when the hubby joined after putting the big one to bed he was like I don’t hear it. The hubby did hear it after a few times and listening really carefully. The best part was JB sat on my lap later and started pointing to my head, shoulders, knees and toes. I wish I was able to freeze that moment as it was so interactive and touching. I know it may not sound like much but we celebrate everything from a word apple to a kiss every single time. Raising a non-verbal autistic child makes us not to take anything for granted. I am excited and amazed each and every day with JB. From him holding my fingers to point at what he wants to approximation of real words. This child of mine is truly amazing. My heart was so warm and fuzzy it could be minus weather and I’m still floating on cloud nine. Hopefully catch it on video next time to share with you guys.
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 […]
We are thankful our home school has a diagnostic kindergarden program for JB. It will be much easier next year this time since we can do the one drop off and it is walkable. I dislike getting the kids strapped into car seats and lugging a million big items around. After some researching, I know the registration for those with special needs should happen much much earlier than the mainstream program. I been in touch with the teachers that run the program and liked what I’ve seen so far. It is a small class with only a handful of kids with up to 2 teachers at times to help. I was initially planning on starting this conversation in December but upon chatting with the principle, he advise us do it right away. It’s true, what’s the point of waiting? We are planning on putting him in there anyways so might as well get it out of the way now rather than later. There is fundings involved and with the way the TDSB works it could take months before we get approved and devise up a plan. This is what I learned: If you child is newly registered but not attending a TDSB you need to set up meeting called SEPRC. It stands for special education program recommendation committee. You go to the school you are interested in and ask the principal to start up the process. The school in turn, provides all your information to the special needs consultant who […]
What do you do when you discover you little baby is a stripper? We found him buck naked yesterday night. That bugger took off his diaper and pajama and was frozen. We left his window opened for fresh air and disovered it when we checked on him at 2am. This was not a first and I’m pretty convinced he’s a stripper. On the bright side, don’t think he’s a poop smearer. He doesn’t like pee or poo in his diaper or underwear so when he removes it, it naturally leaves a big mess. I think I’ve cleaned his sheets and beddings more than I’ve ever cleaned mine in my entire life. I’ve read about kids who like to take off all their clothes. There’s ways you can defeat it by wearing the zipper backwards. Think he will get real frustrated if we do that. The answer to the million dollar question about what do you do when you find he’s a stripper, is you find ways to cope with it. For now, we will continue collecting data. Hopefully catch him in the act and tell him no taking off clothes so he will understand he’s not supposed to be doing that. However he clearly knows he can’t be putting toys in his mouth but he still does it.