2022 a year of change

Been wanting to sit down and write about our 2022 and how it profoundly changed our family.

Truthfully our year changed before 2022 hit and I didnt realize it until I was able to find to reflect on it. It did start to change christmas eve 2021 when my daughter woke up sick and it lasted through christmas. Thought it maybe it was just a flu bug or god forbid covid. As we found out in Jan 2022 that christmas eve was beginning of some serious kidney issues. Everything really changed for good Jan 4 2022 when I got my daughter to Sick Kids Hospital. Our special needs journey up till then had pretty calm once we figured out what triggered meltdowns and various other things. Honestly those first few days and nights in Sick Kids Ive never felt so scared and helpless as father. Knowing this was out of our control was very scary. I am thankful to that first nurse we encountered on the day of being admitted. Her name is Carly. Shes an angel in my eyes. While the Dr’s were taking care of my daughter I remember this nurse noticing how nervous I was because of the circumstance and being on the 8Th floor. She came up to me and asked me if I needed anything? I will say that got my attention because I can’t remember ever being asked that as a parent. My respsonse was let me think about it. After daughter stabilized and 1st surgery was done I went to that nurse and I said I just need someone to talk to. Those few minutes she took were a life changer. The conservations we had about letting the emotions be known and seen along with breaking the shame down as a father were powerful. Throughout 2022 we were at Sick Kids mulitple times which gave some chances for great conversations about life , self care and about what they’re going through as a nurse. I will be honest before Jan 2022 i had no idea what nurses do and how they help patients. I seen obvisouly upfront what they do. The interaction my daughter had with them was amazing. In particiular a nurse named Nicole. In my daughters toughest moments she always seem to be there. It was amazing to watch the patience the nurse had. In the times we had to go back she always seemed to be on staff that day/night. I do believe in some way it was meant to be giving this nurses background. I remember early on there was a night my daughter wanted chips and the only place to get them was downstairs at the subway stand. The atrium was still freaking me out so at that time I couldnt stomach going downstairs at that moment. Talk with my daughter and she agreed on crackers until the next day. This nurse took time to find Crackers which wasnt easy. Thanked her and explained my fear of heights stopped me. Me and the nurse had a honest conversation about this. The postitive way she talked about it changed my thinking. Told me their is nurses with the same and that is nothing to be ashamed of and how they wouldnt judge me but support me through it. That led me to taking some small steps to deal with that. I opened up to another nurse in a different dept and she was like that great we’re here to help you through it. We learned so much from the nurses about self care and just being ourselves and being there for eachother. Though the interaction with the Dr’s during the rounds they’ve awoken this interest in medical science which is great so i can understand what my daughter is going through. I will say I believe in some way this was supposed to happen to help us grow as father and daughter. Going through decemember and christmas break has been nerve wrecking because of the memories. Thankfully we seem to be in a better place starting 2023.

Advertisement

A very different kind of year

Ive been wanting to write about what very different kind of year this has been. Who knew the same week my daughter celebrated her 15th birthday the world would go upside down. The reality of everything hit me when the places and things my daughter loves started to close down one by one. Thats where as special needs parent I felt the weight of the world in trying to explain why the world she knew before her birthday had basically changed in an instant. Case in point her happy place is going to the library and seeing the people we know and reading the books. That week she multiple times about going and i kept putting the real answer as to why we couldnt go because i figuring out how to break it to here. Thats when she hit the breaking point and anxiety took over. For one day she didnt want to eat then we sat down talked through pec symbols about what was going on. Ever since then shes been pretty good. I do admit ive had my issues with dealing with this whole covid at the beginning especially in the first lockdown. We’ve been lucky to have great friends to help me put things in perspective. I do admit the first go around with online schooling was like everyone else a nightmare for many reasons. When schools opened back up it was big internal debate but i found out about how online schooling was going i thought we would give it another shot. I have to say its gone wonderful for my daughter. I will say what has also helped out my daughter in a great way was when the library reopened and browsing was allowed. Of course its been interesting to naviagate going out to places now. We are thankful that most places we’ve gone they’ve been understanding of my daughter not being able to wear a mask. Now with christmas holidays and the school break upon us things are different for us because of this pandemic. We were planning to travel to spend with my dad but after talking with him we decided to put it off until the numbers go down. We normally go to church in person but this its online because our provincial goverment has a lockdown in place. Other than that not much is different. My daughter has been excited for christmas since we passed halloween lol. Everyday ive been getting the same question “is it christmas yet” so to help her out we created a christmas countdown calendar which has worked out quite nicely. My last message is Have a safe and wonderful christmas and new year!!

one door closes and another one opens

I remember like yesterday the day my daughter started kindergarten. All the questions were there. Is she ready? Is she going to have proper supports? That first year of school was a struggle for sure. Being non verbal in a class full of verbal peers surely did seem strange at first. The good thing is the EA’s she had were fabulous. Very patient and understanding of her. She made some great friends that helped her and are still friends to this day. After the initial days she seemed to flourish nicely. Those kinder years were great. Never wanted them to end. She had an EA in sk that was the best. To this day I still use what she did as measuring bar for every EA shes had since.Grade one was little rocky and some of the “I don’t like school” starting to creep in because she wasnt being understood. We corrected that by going into a charter school called Aptus for 2-3 yrs in which the people there brought back out the love of school in her. We went back into mainstream and she’s been lucky to have some great teachers that understand her and accepting of who she really is. Namely a teacher called Ms. Persons. This lady has the heart of gold which is why it’s hard to fathom we are leaving her class. Tonight is graduation night for my lil girl. I’m very proud of her because she has confidence about herself that wonderful. Most kids would love to have her confidence. All the struggles shes had to endure has made her stronger. Highschool is next year and she’s excited. I’m admittedly nervous. With all the cuts to education in this province no one knows what to expect, but I remain optimistic. Just as I remember from the temple grandin movie I watch every year I’m reminded of what she says when starting a new journey. One door closes and another one opens to a brand new journey and experiences.

Coming together as a community

I sit here tonight thinking about how I should write about what has been happening in our special needs community here in Ontario, Canada. Back on February 6, 2019 the Ontario decided to reform the Ontario Autism Program (OAP) by basically under funding families to get services. What they are doing is clearing the wait lists

and sending the funding directly to families. When you consider ABA costs a families  around $70,000 and new program provides an average of $8750/yr starting at age 2 and then only $5,000 above the age 6 until age 18. To make matters worse is this program takes April 1. That therapy that has been happening will end then because of the under funding that will happen. As a result these kids will go into the school system without adequate support to help them navigate the school day. Last week on Thursday we came together as a community to protest these changes in bigger numbers than ever at Queens park.
Yes this fight is about autism services but truthfully the conversation needs to be about equal access for all disabilities. I remember being at news conference talking about this and having a conversation with a parent. This parent said they took her child for an evaluation and office said they couldn’t help because the child wasn’t disabled enough. That hit me hard because it woke me up to the discrimination that happens in the system. I have seen both sides of it. When my daughter didn’t have autism diagnosis and just a non descriptive diagnosis i felt there was no hope because every service is primarily accessible with autism. When my daughter got her autism diagnosis i thought finally there was some light until this came announcement came down in February. When i think what we are fighting for i think of it with the next and present generation in mind. We made the government listen to us in 2016 and i know we can this time too.

What is normal

The idea for the post came from documentary called far from the tree that I had seen with daughter. As a special needs parent you deal with all kinds of people through your interactions. Some of those whether it’d be family or friends will no doubt ask why is your kid still wearing these or doing this. They’ll come out with things like kids your age don’t do that why do you. Now seeing this movie reminded of this fact. It begs to ask what is normal? Somehow society has developed these standards people must live by I.e pottytrained by 3 and so on. There was a scene in this movie where there was a meeting of the little people of america. This is a group for people dwarfism. Someone brought up the fact that theres a test drug out to cure dwarfism which is wrong. One person said it good that these cures are all about regular society trying to eliminate dwarfism because they’re not comfortable. Same thing could be said about other disabilites. I maybe wrong but we are not all created equally to begin. To me being normal is being who are and not someone else wants you to be. I accept my daughter for who she is. Yes for awhile I have fought this feeling but I see my daughter happy with herself so I’m happy for her. I do believe the message of be who are not be who someone wants you to be needs to conveyed better especially with kids and teens who are feeling pressured to be someone they aren’t. The messaging needs to be changed dramatically. So let’s spread that message of being normal is being who are despite what others may say or think.

Embrace difference

It’s been awhile since felt the urge to post. My daughter was watching kids show where one of the characters was talking about a toy they have loved since they were a baby and when friends came by and started to poke fun she the character pretended to not like the toy. That got me really thinking. My daughter has this want to push a stroller around with a toy in it. Granted it’s not very 13 yr old girl like but I say so what she’s happy. that doesn’t bother me too much unlike when we are out and people tend to look at her in a way that’s not pleasing. I know we progressed in society a little bit when it comes to accepting difference. I do think we have a lot farther to go when it comes to embracing difference amongst everybody. Not only with special needs but in cultural sense. When I hear of people berating others from different countries it does break my heart because I as a person do #embracedifference and I teach my daughter that everyday. I guess what I’m asking is can look past the differences and realize that we are all people that have emotions and that want to feel and contribute to society in a positive way.

Looking out for yourself

Life can be pretty crazy for us parents with special needs kids. I’ll be the first to admit looking out for myself meaning self care is often forgotten day to day. This comes to mind today after having a conversation with someone. I love helping others but I realize from this conversation I can’t be effectively in that if I’m not helping myself first. I get a call from school saying my daughter has been feeling sick. I know this afternoon will be all about her so before her teacher drops her off at home I’ve gone for a walk in the sunshine which feels good. I’m gonna use that as a beginning to start to help myself. Remember we are not any good to our kids if we don’t take care of ourselves. Do something that makes you happy even a small thing. It makes a difference.

The best family day ever

Sunday February 18, 2018 will be a day that will be one of those days In the memory bank. The reason being is because my daughter took her first strides on ice skates. Now I’m really honest when I say I didn’t know if this day was ever going to come. It’s just reliving the day she took her first steps when 3.5 yrs old. This day just happened on a whim of taking a trip downtown for some fun. We made our first attempt at Nathan Phillips square which didn’t go well because of the huge amount of people. Considering this was family day weekend it’s not a surprise. She told me she didn’t want to skate because of all the people. Went to get something to eat and came back and it was the same way. Thats when we decided to make a trip down by the lakefront where there’s another skating rink and that’s where the magic happened. She went around the rink 3 times and loved it. On the 3rd she started to let go of me a bit which was neat. Let’s say I was jumping for joy inside because she decided on her own to try it. I admit I wanted to cry because for the longest time didn’t think I would see this happen.

A sense of fun

Summertime always brings it’s fun and it’s intriguing moments. For most it brings a sense of freedom to play without an adult telling the rules like school. Summer is where you get to see the different styles of play. We tend to visit the park quite often and it’s an interesting contrast when it comes to my kid and everyone else there. I admit I do wait for the day where I see my daughters sense of play progress. It’s easy to fall into the trap of comparing which I agree it’s not good to do. When I see her play at the park along the side of kids her age group I do see the difference. Everyone is running around and playing together meanwhile she’s very content to pushing around a stroller with her toy in it or spinning around on some device for hours. Yes there’s a secret wish in me that magically she starts to play like them but I know better than to compare and want that. The fact is my daughter is very happy playing the way she does and that’s good enough for me. Some kids may snicker at her when they see her but it doesn’t seem to faze.

How far we come

Today was an interesting day. Went an appt at sick kids for lasix which proved to be interesting. Came up against all of her sensories in one appt. With a little bit of coaching she made it through nicely. 

Most amazing part of the day was our trip on the GO train after. Some context is needed to really illustrate this. This is a girl who didnt really speak a word until she was about 4 yrs old let alone want to be around other people. Now back to today. We found a seat on the go train and this is the one transportation vehicle she likes to stand up. Next thing i turn around and shes standing in front of the Go train worker having a almost conversation which completly surprised me in a way but in some ways it shouldnt. Makes me proud as a parent who has worked so hard outside of speech therapy to help her have a conservsation and be comfortable around others.  I know some of what she said wasnt clear but the man tried very hard to understand her. In this picture i took i was still in the seat watching her allowing her to navigate the conversation.