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.
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.
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.
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.
I sit here on a bus this morning watching a man with down syndrome organize everything he has before he gets to work. I can’t help but think of my Lil girl and what the future might hold for her. She does have some talents like singing and loves to be around people. I’m doing all I can to prepare her for what lies ahead, I just pray shes able to lead a life of great meaning being able to do what makes her happy. I know we have all have these thoughts wheter our kids are special needs or not but I think it’s more microscopic when special needs is involved. Right now she’s a happy 12 year old so I try not agonize over it too much. Well I’m gonna end it here because my stop is coming up but those of us in the special needs community keep strong because we’re all in this together.
This was unlike any other christmas in the past 10 years. With my child becoming more verbal there was the pointing out of what she wanted for christmas whereas previous years she didn’t really acknowledge what she wanted or christmas for that matter. With that happening it made christmas so much easier in a way. They say to manage the stress and anxiety that asd kids get at this time of the year. I think we did a good job since there was no family functions to be at and purposely avoided going to the malls. I knew there was excitement because at the beginning of November I was getting asked if santa was coming yet. As the big day got closer and we counted the days the excitement grew tremondously. We have a tradition of going to church christmas eve and christmas day. This we planned perfectly to be there nice and early cause last year we weren’t and had to stand during the whole time which wasn’t fun for her. The added bonus was a friend spotted her and they spent part of it together which was cool. I worry about her making friends at school until I see that happen. Christmas morning was exciting. She woke up and she’s asks me “did santa come?”. It was nice to see her get excited about christmas after be worried all these years it would just be another for her.
Merry Christmas and a happy new year to all my followers!
Today is one of those really good days. My daughter just started doing a reading buddies program at our local library. Its a great program where teens volunteer to read with the younger kids. Its great for her to participate in this for the social aspect. There was a time i would be rattled with nerves but not tonight. Even though its only 45mins its nice to have time to myself to think. Happy to say it went quite well for her. We also went to parent workshop about iep and iprc. Basically its what helps your kids get support in the school. Even ive dealt with this stuff a few times it was nice to learn some new stuff. Like for instance the alternative education section which pertains to things not educational. For some thats feeding for us thats tolieting. That has always been a struggle. She still uses diapers everyday which isnt a bother really. They say pick your battles. Well thats a battle ive picked and tried that has resulted in loads of extra laundry. We decided just to go back for time being. That was after having a heartfelt conversation with her teacher. A good lesson out of tonight is keep level headed and open minded when approaching the situation. On top of that my girl lasted a 2 whole hours by doing one sensory after another. Hope that helps someone out there.