My hubby’s cousin has a daughter who is autistic as well and I got a chance to speak with the older sister about it. We rarely see them as they live far away and I haven’t seen her for at least 2-3 years. I made sure I spoke to her before they left. She is now in grade 9 and her sister is 2 years younger so almost the same age gap as Mase and Jay. It was quite obvious that they have battled an uphill battle for literally years and I can seen how worn down they all are. The parents didn’t seem like they wanted to talk about it so we didn’t push. Raising children is hard enough and raising children with special needs is just a whole new ball game. So back to my story, I mainly wanted to see how life is from the perspective of an autism sibling. I poured out my heart and told her how I felt about my oldest one and how I know it is unfair most of the time and asked her for tips she can think about to make it easier for Mase. I told her as a mom, it is a struggle to divide up the time especially when one of them requires my attention so often. She was so open and shared how she felt ignored at times and I was fighting back tears as she was telling me. As hard as I try, it is enviable […]
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 […]
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 […]
The other day as I was walking home from their school I had Jay on my left side near the street and baby girl on my right side. I actually thought of having Jay on the other side but decided it was safer for baby girl should a car run up the curb. You should always have your little one further from the street just in case and I always practice this but when you got more than one kiddo, what do you do? I hold Jay’s hand with all my might most of the time but this little one managed to slip out of my hands. It all happened so fast but I was extra aware of my surroundings for some odd reason that day. I knew there were two cars on both side and I quickly flicked off baby girl’s hand and caught him. He was within arms reach and didn’t get far but I had a very good scare regardless. My daughter held me so tightly I had to flick her off and she fell. It was not a fun scene, I had Jay on the one hand very tightly now and picked up baby girl with my other arm while on my knees. She was scared and crying. The older one was there too and I don’t remember if he was holding her hands but he did say she fell and hit her head. My neighbours was just steps behind us and witnessed the whole thing. […]
Sorry it’s been a while since I posted, been just really busy with summer programs for the kids and getting J into school for September. Sad to say, one of the funding I was really hoping on getting came back at zero. It’s heartbreaking for me because last year I found out about this fund after a week or so after the deadline and this year even though I marked it on my calendar, it didn’t work out because I submitted an image that is blurry. After resubmitting, the funds was already exhausted. I was sad for a long while but it is what it is. J been doing very good, well good days bad days but overall progressing well. He is really doing well with simple request and sleeping a tad better. Storyboard request is excellent and he is such a smart boy. We got appointment for communication device appointment at Holland Bloorview next month and I’m excited to see what it will bring for him. I’ve notice more sensory behaviours and some of them is kind of scary. He likes to jump off chairs and stairs and everything really. He also seem to like to look up a lot and had a bad accident at the park as he looked up and continued walking and didn’t see the ledge. I think he likes to crash into things as I’ve noticed he likes to roll off the bed onto the floor. I can’t be certain about that behaviour yet […]
I spoke to another parent the other day and he said his daughter woke up at 5:30am and wanted to play. I replied, my daughter did the exact same too. My son on the other hand wakes up at 2am and stays up and he replied yup his does the same sometimes too. We both chuckled as we shared our sleep deprivation stories. It was so nice sharing my struggles without the pity eyes/look or questions about how to improve his sleep. I wouldn’t wish our struggles on my worse enemies not that I have any at all, but knowing that someone out there shares my struggles is comforting because I know we’re not alone. When J first got his diagnosis, I went to a few parenting groups and remembered that I felt better when other families shared their stories. Maybe from time to time, I should revisit parenting groups again to remind myself that we’re not alone. This week we had 3 bad nights and I wonder how on earth did we manage 3-4 bad nights per week a year ago. The short answer to my own question is you do what you have to do. When he has a bad night, I always let him nap for 30 mins if he falls asleep in the car. I think people at his school has gotten used to seeing him asleep in my arms.
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 […]
For the most part, we split the pickups/drop offs because it just gets too hard dealing with all three. When J is happy it is fine picking them up together and I’ve done it before. This week we had an ice storm and J’s school warned me they might close at noon. Wish they told me earlier because by time I dropped him it was 9:45am. The hubby asked why I didn’t tell them umm… we got work, how can we just drop everything and pickup. I agree with him but also see it from the worker’s point of view. I let it slide as it wasn’t a for sure thing. By time I settled into working, I get an email from daughter’s daycare saying they have to close at 4pm. I was like that’s just great. J had speech till 3:50pm and it will be cutting it real close for pickup at 4pm. I started arranging for hubby to leave work early but after a few minutes of arranging, I was like naw just going to tell daycare I can’t pickup by 4 and will be 5-10 mins after 4. Guess they had no choice but to agree. 3:50 rolled around and with traffic of course I’m late. Rushed to daughter’s daycare and felt terrible for making one girl stay behind. As I was dressing daughter, J runs off. I’m clearly frazzled as the daycare girl helps me hold J’s hand so he does’t wander off to the rooms. […]
Yup you guessed it right, the dentist. The last dentist visit was quite a shock for me as everyone in the room was sweating. J was sweating from fighting his way out, hubby was sweating trying to hold J down, I was sweating holding baby girl on one hand and fanning the other down with the other hand. There was not only sweat but also blood. This time around, I was nervous for days before even going in. I know right, I’m not the one holding him down or the one doing the cleaning but just standing by making sure he is somewhat okay. To my surprise, he did amazing. Maybe 6 months older made all the difference. Or maybe he remembers the drill and realize if he fights too hard it will hurt more? Don’t get me wrong, it wasn’t a walk in the park but my anticipation of full on fight wasn’t there so anything less was manageable. The hygienist said his teeth is very clean and I give full credit to the husband. All in all, cleaning and polishing took a whooping 15 minutes followed by a less than 5 minute check by dentist. All of that ended costing me 170 bucks. How on earth is 20 minutes of work 170 dollars? When you slap on children to dentist it is considered a speciality and anything with speciality get’s a hefty fee. I do get why they charge more considering my child wanted to bite the girl’s […]
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 […]
2018 has been difficult for us and this December marks the 1 year mark since the diagnosis. Has things gotten better? My mom always ask me oh J must be better now and sleeping better right? No, he’s the same mom. We are still struggling and quite sleep deprived. We still get the bad nights where he is up before the sun rise. Just on the 26, he didn’t sleep till 1am as he struggled to settle in and woke up at 3:30am. Sleep is one of our biggest struggle and that leads to other things such as meltdowns because he is exhausted and self injury because he is frustrated. It is still hard seeing him cry for hours, bang his head on the floor, purposely fall and hurt his knees or foot. I am very doubtful I will get use to this or this will be easier as he age. As a mother, one of the hardest thing is to witness your baby struggle. I think what has improved is that I’m stronger now. Not physically but mentally. I know what to do when he has his meltdown most of the time. Know how to redirect him to something I know will calm him down. It is much easier at home when he has his moments but when I’m outside his strength is starting to surpass me. I know for a fact, I will not be able to just pick him up soon because I’m already struggling. He’s not […]
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 […]
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.
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 […]
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 […]
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.
This free preschool program actually drove me nuts. To begin the waitlist to even receive service is like a 6 month wait. Once you get an assessment you then wait for the next available open “block of service”. After your “block” you have to wait 6 months for a reassessment and then the cycle goes on with you waiting for the next available “block of service”. Background info on the said program. It is available to children from birth to JK entry. Once your child goes to school, the school board kicks in for speech resources. We applied for this before JB was 2 years old and got our first “block” in August of 2017. After our 6 week session we had to wait till March 2018 to get reassessed. After the said reassessment, we had to wait for the next available block which was June/July 2018. Again it was a 6 week session and the cycle goes on with waiting for reassessment and next block. To sum this up, we essentially got 6 sessions of 45 minutes once per year. With the timing when someone register for the program before 2 years of age they will likely get 3 blocks of service before they go to school. According to the SLP, that is their policy and guidelines. You must wait 6 months before getting reassessed and after reassessment you have to wait for next block. I got so frustrated I reached out the City for clarification on the said […]
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 […]
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 […]
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.
You know when you make a mistake and vow to never make it again? Well, it turns out you forget and you make the same mistakes again and again. Rule number one with JB if he is angry we learned to always try water first, followed by snacks in case he is hungry and then toys. The rule stands if we have no idea why he is angry and upset. We took the fam jam out to quickly buy one thing and eat some ice cream at McDonalds. All was well when we got there and the one thing became 20 things. Hubby wanted to buy J corn nuts since he likes it and occupational therapist says it helps with his sensory needs so he took the boys to get that while I was in the next isle getting hot sauce. I hear J whine and making lots of unhappy noise and thought oh boy he probably sees the chips. I quickly return to meet them and said maybe he saw the chips in the centre isle up ahead and how we should do a detour to avoid it. Hubby said no need, he just wants the corn nuts. We normally would open snacks in the store but the nuts is an item you weight. How can we pay for it after he consumes it all? We end up getting the chips to hopefully calm him and he happily ate it. We made it down to back of the store […]