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 […]