We got this right before Christmas 2019 and been using it daily. It is a good tool for communication when your kiddos are non-verbal. It ease a bit of frustration for simple request such as water or food. I’ve done a bit of research before deciding on which program to use. I’ve tried LAMP, TouchChat and I forgot the other one. Out of all those I was either going with TouchChat or Prologuo2go. We ended up deciding to go with Prologuo2go because the edit function seems a tad more suitable for us. We choose the 32 layout per page for now and using Josh as the voice. There is a program called called ADP (Assistive Devices Program) with the government of Ontario. You can read more about it here. You have to get a referral and we got ours from our SLP. In Ontario, Toronto there are two sources you can go through. Either Surrey Place or Holland Bloorview. From my understanding, Holland is much quicker but also very strict. If you have been classified as developmental delay then you have no choice but to go down the Surrey Place route. It is really the same device that you will get but very different path to get there. Can’t speak for Surrey Place since we got ours through Holland but it was a very frustrating process. They wanted him to do more than request and have meaningful communication before granting him one. How are we supposed to teach him meaningful […]
We got the official in November 2016 so its been a tad over two years. Jay turns 5 in about 5 month. Potty training: I’m proud to say he is potty trained and still wears night diapers. We started potty training him fully at age 3 and at that time if I’m honest I wasn’t sure how successful we will be. This potty training journey has its up and down and still does but I’m so extremely proud of this little fellow. For starter at least there is less poo smearing mess to deal with. That is a win in my books even if it is one less a day but now this boy just gets up and goes himself. I am sorry that I underestimated you, thought we will be cleaning poo with toothpicks for so long. I am so thankful beyond words can describe. I’m unsure why he is refusing to pee some days but when he does we offer him more water and bring him more frequently. Also keeping an eye out on unusual behaviour. Eating: He’s always been a good eater but the past few months he would rotate in a cycle of food strike then eats very well and back again. He clearly has his favorite but getting him to eat it at school is just a different story. School: He finally got a full time teacher who happens to be the temp teacher. He is adjusting well there but I would pretty much say […]
Mase, how are you 7 already? I still remember holding you the very first time and loving your cute little face. I can’t thank you enough for being who you are. I’m unsure how someone can be so thoughtful at such a young age. You are going through a phase right now and I’m starting to see a rebellious side but don’t worry I will or will try to set you straight lol. You are such a planner and you never cease to amaze me of all your big plans in life. How you plan to marry Ella and have 3 children in a house with 3 bedrooms. How two of them are going to sleep in bunk beds and how you plan to drive a two seater car to go to work but have a family suv for weekends. Your imagination is so wild but fun. Keep imagining and work towards your goals because mommy fully support and believes in everything you do. Well maybe not every single thing but talk it through with me as you go and we will work it out. You truly deserve the world and mommy and daddy will strive hard to give you what we can. I know it can be very hard for you to understand at this age but know that we are trying our hardest to make it easier for all of you. When time are tough, read all the emails/letters I write you to remind you how much you […]
Before Jay was born a friend told me about her routine with her girls and how she gives them each alone time. Her older one was having jealousy issues with her second child and giving her one to one mommy time helped. I loved the idea so much I implemented it when Jay was born. We do mostly small things like playing games, walking, going to park or malls etc. When my third was born, I tried to spend more time with the oldest one but it wasn’t the one on one alone time I hoped for. About a month after my third child was born, Jay went through one of his toughest period where he was waking up 4 times a week crying bloody murder and staying up for hours. As hard as it was we made efforts to spend time with our oldest but often with baby girl next to us. I don’t think he will remember us trying so I implemented an official Mase day. It acts as both Mase day and baby girl day as one of us will be dedicating time to either one of of then. We officially started this two weeks ago and it has been going very well. Mase day is at least an hour every week dedicated with just Mase. We do anything he wants with zero distractions. My intentions was to give him his hour every Saturday when Jay goes to therapy. That ways husband can take baby girl or […]
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.
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 […]
Lack of sleep is a norm for us and I’ve gotten used to the point where one of our child could be screaming bloody murder and the either hubby or I are too exhausted to hear. The oldest had a bad nightmare yesterday night and was screaming. I walked in and after comforting him, he told me the sweetest thing. Well first he claims he called us 300 times and how no one heard him. Then he said he was about to go into J’s room but he didn’t because he didn’t want to wake J. He actually walked out of his bed and went to J’s door but didn’t want to wake him and went back to cry in bed. I felt horrible but the same time so happy. This 6 year old knows not to wake his brother because he has sleeping issues and will stay up for hours. Despite big brother’s effort, J still woke up later and cried for 4 hours. Why must it be so hard for him to stay asleep. His little body is so exhausted from being up and bawling his eyes out. Hope he’s not getting sick. Can’t have him sick again. Last sickness was a scene from horror movies where we got in the bathtub to give meds because he pukes at the sight of medicine. I can’t help but to think maybe I’m putting too much pressure on the oldest one where he feels the need to protect his brother. […]
This one is dedicated to my oldest child, you never fail to amaze me and I’m left speechless. You are truly mature beyond your age and I’m the proudest mama alive. I never expected you to take care of your siblings the way you do. Today you took your Jay to use the potty all by yourself. It was so good you caught a success because those are the best and I’m super happy it made you feel so proud of yourself. You should be so proud of yourself because I am so proud of you. This was the first time ever you taken Jay to use the washroom and I never expected you to but you been keeping track of when his last pee was and thought to yourself it is about time he goes. Seriously how does a 6 year old keep track of his little brother’s toilet schedule? I know your brother’s autism affects you more than I can imagine and I’m worried about that all the time. You actually told your friend’s mom that you are so tired because Jay wakes you up at night. This was news to me as I always assumed you slept through it. I’m unsure if you said that because you wanted to sleep over at their house or maybe you do get waken up by his cries and screams. We had a talk and you are instructed to tell us every time you get waken up by Jay. I’ll now […]
For those who read my letters to my oldest, you know how sweet my child is. Today was such a sweet day for me. He’s off on his PA day so we went to his parent interview early and had plans to do lunch and tobogganing. We were both so excited about it. He got to choose the food and before we left the house he turned to me and said mommy I’ll pay for lunch today. We recently opened a bank account for him and he got one of those debit Visa card. He’s been all about saving and not wanting to use his money so he can save. I thought it was amazing he wanted to offer but he really wanted to buy me lunch so I let him. My 6 year old child wants to buy me lunch. I chuckled but my heart literally melted to the floor. We got to the restaurant and he looked at the menu and decided what he wanted. He did change his mind a minute in but he made the decision all on his own. We had a great lunch and he said all the right things. He ended up paying and was so proud of himself. In reality, I was the proudest one. This boy will be one fine young man when he grows up. The person he finds to spend the rest of his life with will be the luckiest person alive. As we were wrapping up, Jay’s school […]
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 […]
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 […]
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 […]
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.
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 […]
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 […]