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 […]
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.
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 […]
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.
When things get real hard and a series of unfortunate events pile on one after another, go ahead to vent or cry or whatever method of expression. Take the time given the situation. Sometimes you may only have a few minutes and your kids need you. In those situations if you feel you need more than a few minutes maybe it’s a good idea to call for help. Not everyone has help but if you do I suggest you take full advantage of it. Some days all I need is a few long sighs, sometimes after a long day of battles as I lay down to reflect on the day a good cry makes me feel better. However crying makes my eyes all puffy the next morning, so I try not to do that anymore. I’m not going to lie, I worry about his future a lot. Will he be independent enough to go to school next year, will he make any friends at school, will there be bullies to make him feel sad, how will he communicate this to me when he is non verbal, will he be able to find a job, drive a car, cook on his own, find a girlfriend and get married, the list does go on and on. I know the same questions could be asked of a child without autism. All these uncertainty that comes with autism it is hard not to worry. I’m coming to terms with the uncertainty and taking 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 […]
The sunshine is not after the rain after all. The after math of a shitty disaster is A series of shitty discoveries. It started off with the damn mat with colours that disguise and hides the poop. Omg you have to examine row by row to find it. After cleaning that I noticed the indoor bike had it too. That night JB kept trying to clean the chair with his hands and hubby wondered what is on it and yes you guessed right, it was poop. All dried up and unsure which day it was from. Sanitization on full swing and we expect more discoveries as the days go by. Aside from steam mop other necessities are Lysol wipes, hand creams and magnifying glasses. On the bright note, he had a dry overnight diaper. Think he really starting to hate peeing in his diaper. He starting to walk funny with a pee in there and wanting to pull it off. It’s a good thing with a few pounds of elbow grease for us to clean.
We actually have membership to Ontario Science Centre but they participate in the Access 2 program with Easter Seals Canada. Kids 2 and under are free and with the Access 2 card a support person gets in for free. To get the free pass you have to line up at guest services and the line there is much shorter than purchasing tickets. They just look at the card and issue you the free ticket. They don’t even ask you how old your child is. I guess JB looks like a baby to begin with. We have membership so don’t need to use the Access 2 card but there was one time my sister joined and she got in as JB’s support. They dedicate two areas to kids under 8 called the KidSpark on the so call 4th floor. I thought it was named KidsPark all this time till I looked at the name again. It is really KidSpark because is an area to spark their creativity. Their elevator is a bit whack as going up means down and going down means up. You would figure going to the 4th floor is up but you press down on elevator. Took some time to get use to but we get the hang now. My kids love it there but it does get very busy at times. We like to go on Saturdays since they open later and most people leave by 5pm. The other kids get JB angry at times but we feel […]
Week two of new daycare but the place call themselves “school”. We did a 6 week summer try out and was happy so we decided to continue trying it. He had a one to one for the summer program so everything was good. Last week was first week of “school” and they implemented a gradual schedule where Wednesday, Thursday and Friday is only for 3 hours. This is officially week two but also first full day. Overall he seems very happy when daddy picked up and even napped on way back. He woke up from nap himself so wasn’t his grumpy self when we have to wake him. Ate his dinner happy and was giggling all night. Love love love his happy days. Wish he can only have happy days forever. Love watching him play when the other two kiddies are sleeping. Even caught a video of him spinning in circle and posted it on Instagram. Too happy and excited before bed and looks like he’s going to struggle to go sleep. My sweet child, please sleep soon.