I’m reminded from time to time how hard it can be for other families who is struggling on a daily basis. Today as I picked up J, his classmate had a seizure right in front of us. Well right behind me, I heard a big bang and when I turned around he was on the ground seizing up. He wears a helmet full time and I now understand why he does. He hit the floor pretty hard and as the teachers were in panic mode my heart broke a lot for this child and his family. I provided the timer on my phone so we can time the episode because if it is longer than 3 minutes they have to give him some medication. It lasted a long minute and as I was walking back I gripped Jay’s hand hard thinking how thankful I am he doesn’t have seizures. How can your perspectives not change when you witness a glimpse of the hardship other families have to endure. It is hard especially during the frustration and meltdowns but our bad days is likely a good day for some. Comparison is no good but when it makes you thankful, I think it’s ok. It makes me grateful and I trek through another day. To those who have many hardship conditions, I stand by you so you are not alone. I will continue to learn more about whatever it is so I can be more aware and spread awareness.
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 […]
My my, how did time fly by so quickly. I really want to slow down time and just enjoy you being so little a bit longer. I absolutely love you at this age. You are sweet, sassy, fun, giggly, and also mean but cute. You are such a little brat and crybaby and I’m unsure how your brothers tolerate you to be honest. You use to get Jay crying so often every time you scream with your little high pitch voice, well he still cry but not as often. You are welcome to grow out of that as I don’t like it very much either. My love, you have no idea the joy you bring to our lives. You are so smart and interactive that I love hanging out with you, not that I don’t love hanging out with your brothers but you are so fun. You are so advance in your language skills and although I was sad at one point when I compared you with J, I am now happy to hear you yap on and on. You see, language is something I no longer take for granted. I desperately want to hear words from all of you. Go on and talk as much as you want. I find it a bit bittersweet as I want you to stay little but at the same time it will or should be easier when you are a bit older. For start, we’ve always wanted Mase to have a sibling to […]
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 […]
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.
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 […]
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. […]
This fund is available 2 times a year and there is a random selection for all those who apply within the time period. This is my 4th time applying and we were not selected the first three rounds. Hopefully better luck this time. The 2019 One-to-One Summer Support Worker Reimbursement Fund is available to Ontario families of children or youth with ASD who retain the services of a one-to-one support worker for their child to attend a community summer camp or summer program. Maximum reimbursements of $600, per child or youth, (ages 17 or less) will be made to subsidize services purchased between June 24 and August 30, 2019. A minimum of 500 families from across Ontario are expected to receive reimbursements. Reimbursements will be provided based on a random selection made from all eligible applicants who apply between May 6 and May 31, 2019. Process 1. Application: We will accept completed and signed applications from May 6 and May 31, 2019. Your application must include evidence of a clear ASD diagnosis from a professional who is qualified to make the diagnosis (see website for details). 2. Selection: By June 7, 2019, 500 families will be randomly selected and ALL applicants will be informed by letter whether they were selected to receive funds or not. 3. Payment: Autism Ontario will issue cheques to the randomly selected families who have submitted (by no later than September 13, 2019) all original receipt(s) for fees paid by the parent of the child with […]
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. […]
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 […]
His frustration is to the roof today. Every morning is a crying battle. If I was to guess, I think he’s tired and lazy to come down but at the same time hungry. Don’t mess with this boy’s food, he will eat you alive. Sometimes he cries and makes the little one cry and in turn makes him cry harder. All this chaos in the morning can’t be good for the older one. Somehow we all manage to get out the door not too terribly late. I’ve noticed the little one starting to imitate J with his meltdown. Really of all things to learn you have to learn this one? This am was a real struggle and it sure didn’t help when the day started before the sun was out. He has these LEGO markers and his little hands just couldn’t hold them all. Every time one drops he gets so angry and frustrated. He would start stabbing himself with the markers and cry harder because it hurts. I can’t protect him from hurting himself all the time and when I don’t catch him it hurts me watching him cry. My beautiful child, only if mommy can help you become less frustrated. He can be laughing one moment then full on bawling the next. When I look deep into his eyes, his sadness really gets to you. How can a child this small have such sorrow and sadness? No dinner tonight again. He’s on some food strike. Literally the full […]
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 […]
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. […]
All the information below can be found by going to respiteservices.com. Family Directed Respite (FDR) funding is a reimbursement program intended to assist families who are not currently connected to Ministry funded respite/camp programs, to develop and direct their own unique respite plans. Family Directed Respite funding is administered by respiteservices.com on behalf of the Toronto Respite Network. Note: Applications will be posted each year in mid-January and applications will be accepted until mid-February. The 2019-2020 application will be posted on January 14th by noon! ELIGIBILITY: Child must be diagnosed with an Autism Spectrum Disorder (ASD). Child is eligible from the age of 2 until their 18th birthday. Child must reside with a caregiver and be a permanent resident of Toronto. Family required to have made an application to Special Services at Home (waitlist families are eligible). Families accessing Ministry funded respite/camp programs may not be eligible. If you have questions about the programs you are currently accessing please contact them directly to inquire about funding received. FDR eligible expenses: FDR ineligible expenses: Camp fees to a limit of $750/week Meal, busing, t-shirt, or other costs associated with program/camp Lessons or classes of any kind/ 1:1 support in the class Respite program fees to a limit of $150/day. Sport/recreation fees Assistive devices or equipment Daycare fees 1:1 staffing in home or community Staffing support (in a camp or respite program only) to a limit of $20/hour. Workers must be 18+ and live outside the family home. Activity Costs (e.g. field trip fees, memberships, etc.) Tutoring, therapy or therapeutic rec programs (e.g. ABA, IBI, SLP, OT, PT) Transportation Administrative or registration fees Important information: • The 2019-2020 application will be […]
What does that even mean? Frustrating when your regional provider doesn’t seem to understand that this new program doesn’t kick in till April 2019 which means everything remains the same as is until that day. So if you happen to be on top of the waitlist and get service you can do that for up to 3 months before the children’s budget plan kicks in. For us, we are still waiting anyways and likely not on top of anything so it is status quo. I do fully understand that finding out where we stand is not really relevant if we are not on top of the waitlist but I’ve been given this information previously so why can’t I find out today where we stand. Surrey Place refused to provide me with the information and directed me to the 1-888-284-8340 line. That line didn’t have any information on where I stand. After I explained my situation, she gave me a direct line to Mona Haibeh. Mona mans the general inquiries from the Ministry of Children, Community and Social Services and you can reach her at 416-327-6790. She was helpful and will be contacting Surrey Place regarding my waitlist confirmation. Funny how I have to jump hoops just to get information. I think I’ve learned that sometimes that’s what you have to do. If someone says no, you have to take charge and contact people above that person. You have to be strong and not take no for an answer. Your regional/service […]
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 […]
Beginning in 2018, the Ministry of Education is providing new Fee Stabilization Support (FSS) funding to help offset the increases in child care fees associated with bringing staff up to the new minimum wage rate of $14 per hour effective January 1, 2018. The funding was intended to help child care operators meet minimum wage requirements so they wouldn’t have to raise child care fees for families. In some cases, the centre was able to provide a refund to parents who pay full fee. I know some who got a small chq but any rebate is good. You can check how much was allocated to your city for 2018. The 2019 Fee Stabilization Support Funding will be determined within the Provincial Government’s spring 2019 budget. An update and a 2019 application will be provided when the Province confirms the funding.
Today is #bellletstalkday and I would like to dedicate this to my childhood friend who lost her hubby recently. My journey led me to take life one day at a time and think my friend might be on the same page right now or possibly one hour at a time or even one minute at a time. I will not claim I understand the pain and suffering she’s going through because nobody can say that. I know the pain I feel for her is just the tip of the iceberg of her actual pain. I cannot even begin to imagine her pain. Her journey right now is likely very scary, hard and alone. The one thing I want to remind her is you have many friends and family who love and care for you a lot. From a mom to another, when strong is the only choice you have, you become strong. I know right now being strong is not on her priority list so take the time but you will become strong. I hope she will reach out and talk when she is ready. Let’s raise some awareness and acceptance for mental health because mental health is a real thing and it affects many people we love. It takes a village to raise a child and small changes can really make a big impact. While I’m on my autism journey with J, other’s are on a journey of their own. I am forever grateful of my support system I have.
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 […]