The importance of support

This blog is to thank everyone who has become a support system for me. I always knew it was important to find other parents who were living with the challenges of raising a child with special needs. People who understand the joys and frustrations of the day to day adventures of raising our kids. Sharing stories, comparing information, raising awareness and making new friends are only part of it! Knowing that you are not alone, that there are people who understand, people you can talk to about anything you are feeling, that is the important part for me. Sometimes I don’t want to talk to my family about K and B. They don’t understand the emotional, physical and financial demands of raising children with SN. For example my mother in law, who I adore, has criticized me about why I didn’t fight for services for K sooner. Telling her that the services for Down Syndrome are different than those for Autism so it’s next to impossible to find them for both was like telling her the sky is green. She just didn’t accept it. My sister once told me that B seems to her to be the type of child to hurt small animals! Try explaining ADHD after hearing that! I love her, but that comment really hurt.
Not only do I believe support from parents is important, but I believe businesses and workplaces should also be supportive if some of their employees are dealing with children with SNs. Hubby is going through a hard time with his workplace right now. K had to have 2 eye surgeries last year, which meant we had to make bi-weekly trips to the hospital for checkups, etc. We would try to make appts outside of his work hours, but sometimes that proved to be impossible. Hubby’s contract states that any special paid leave is approved by management, but management didn’t think it qualified for special leave. Hubby had to use all his vacation and sick time to cover the lost wages, and even some of that was denied! We would get paycheck after paycheck with days deducted! He decided to go to senior management and his grievance has now gone national. I hope above hope that the corporation understands and perhaps changes the special leave description. But unfortunately ignorance is more prominent than awareness. I told him he should take K to the meeting with him and leave the room for a “bathroom break”. Let’s see how they handle him for 10 mins!
Enough ranting, I’m supposed to be thanking those who DO understand! Thank you to all the teachers and EAs at K’s school for their hard work everyday. Thank you to the doctors and nurses at The Hospital for Sick Kids for their professionalism and comforting words assuring me K will be able to see again. But most of all, thank you to the amazing online community I have found (Team Twitter you know who you are) who make me laugh, cry and learn new things everyday! I am so thankful to have found kindred spirits! You have finally got the thought through my thick skull that I am NOT alone!

P.

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