Non verbal frustration from being sick

Posted Leave a commentPosted in Struggles

The last week has been terrible. This boy is truly the last person I want sick in the family. I’ve known this since little sister was just a newborn. I much rather have her sick than Jay. lol that sounds a tad unfair to say and I really do love all my children and seeing any of them sick brings pain to my heart. I get it, you can breath, you have no appetite, you are tired and your basic necessity can’t be communicated quickly when you need it. I’m sorry it took us so long to realized that all you wanted was just water. You were crying in bed and we were trying to quickly put your brother and sister to bed so we can come back to you. This feeling of helplessness eats me up alive especially since this was not the first occasion you needed something so basic that I didn’t get. I will try harder and harder next time. Watching a sick child breaks my heart. I can’t be sure if he is feeling pain in maybe his throat or ears or stomach. I’m super vigilant in watching for cues but when he isn’t able to tell me, I’m always worried. Sister was able to tell me her tummy was hurting and every time she tells me something I so wish Jay can do the same. I don’t dwell on it forever but as she tells me she needs water, I think for a few second […]

Proloquo2go AAC (augmentative and alternative communication)

Posted Leave a commentPosted in Happy, Resources and funding

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 […]

Bad nights two in a row

Posted Leave a commentPosted in Sleeping Issues, Struggles

I mean we should be use to this as it wasn’t long ago he would have bad nights back to back but it’s been a while. Looking back, how did we even manage? I remember very vividly that there was a time where it was 7 bad nights in a row. Funny how two nights seems so hard now when we clearly had it worse before. I think it comes down to our body getting use to the sleep and when he has the bad night the next day we can recover but when it is back to back it takes a toll on us. My little bugger is clearly not well and has a very mild fever. Been in bed all day today and not eating anything. Hopefully he feels better soon. No more watching Star Wars and will have to sleep when the kiddos sleep.

2020 March Break Reimbursement Fund – Application Ontario ONLY

Posted Leave a commentPosted in Resources and funding

We been applying for both March break and summer for the past 2 years. Unfortunately we never get selected. However I still apply and keep my fingers and toes crossed. Below is the information for Canadians who live in Ontario. There is also a link to the application directly. After you apply you get an email confirmation so look out for that. Good luck. The 2020 March Break Reimbursement Fund is available to Ontario families of children or youth with ASD who retain the services of a one-to-one support worker OR who has paid for their child to attend a 2020 March break camp or program, but not both. Maximum reimbursements of $350, per child or youth, (up to 18th birthday) will be made to subsidize services purchased between March 16 and March 20, 2020. A minimum of 1,007 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 December 16, 2019 and Jan 24, 2020. Process 1 – Application We will accept completed and signed applications from December 16, 2019 and January 24, 2020. 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 January 31, 2020, a minimum of 1,007 families will be randomly selected and ALL applicants will be informed by letter whether they were selected to receive funds or not. 3 – […]

Jayden update: 2 years since diagnosis

Posted Leave a commentPosted in Happy, Struggles

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 […]

When the older one acts up, he reveals sadness

Posted Leave a commentPosted in Struggles, The others

The big one was acting out the other day and I stood my grounds and sent him to his room so he can calm down. Clearly it wasn’t enough calm down time but I went in anyways to chat. He goes off saying it’s the end of the world and how he’s right. He then says how I think he is useless. Woah, that wasn’t the first time he said it and I got the drill how he’s guilting me but then he goes off saying how I’m always spending time with his baby sister or Jay. There’s clearly some jealousy there and I’m not sure why he would think I think he is useless. He’s my everything and useless is not a word I would ever use to describe this child of mine. I was hurt with his thought. I tried to explained to him he is not useless. I even pulled up my blog and showed him how proud I am of him. When your children outnumber you, someone will feel left out. Maybe he’s over dramatic or maybe I have to step it up. We haven’t been doing Mason days lately because I signed him up for soccer and basketball sessions the time we normally do it. I cancelled those two activities so we can start Mason day again. We will also try putting sister to bed earlier that way I’m free to tuck him in bed and can spend more time asking him how his day […]

Thankful we don’t have that

Posted Leave a commentPosted in Uncategorized

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.

Happy 7th birthday Mase

Posted Leave a commentPosted in Happy, The others

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 […]

Happy 2nd birthday my princess

Posted Leave a commentPosted in The others

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 […]

Spoke to an autism sibling and it got me good

Posted Leave a commentPosted in Struggles, The others

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 […]

Autism sibling one on one time

Posted Leave a commentPosted in Happy, The others

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 […]

New high pitch scream

Posted Leave a commentPosted in Happy, Struggles, The others

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 […]

He poo in the toilet, he did it, he did it

Posted Leave a commentPosted in Happy

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.

Off to a not so good week

Posted Leave a commentPosted in Struggles, Uncategorized

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 […]

Happy Birthday my beautiful 4 year old

Posted Leave a commentPosted in Happy

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 […]

If you got a runner, always take extra precaution

Posted Leave a commentPosted in Struggles

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. […]

2019 One to One Summer Support Worker Reimbursement Fund

Posted Leave a commentPosted in Resources and funding

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 […]

Thankful my oldest child is so sweet

Posted Leave a commentPosted in Happy, Sleeping Issues, The others

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. […]

New Sensory Behaviours

Posted Leave a commentPosted in Struggles

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 […]

Sleep deprived is so common in autism family

Posted Leave a commentPosted in Sleeping Issues, Struggles

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.

IPRC update: Consultant agrees to identify him as exceptional

Posted Leave a commentPosted in Struggles

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 […]

I wish I can understand why you are so sad

Posted Leave a commentPosted in Uncategorized

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 […]

To the world’s best big brother

Posted Leave a commentPosted in Happy, The others

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 […]

The best PA day date ever

Posted Leave a commentPosted in Happy, The others

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 […]