9.7.10

What do I know? Somethings to Share :)

My job allows me to come in contact with wonderful families - some who manage to take everything life throws at them in stride, and others who with a little bit of help see that they have the strength to get through the day and many more and on to a life full of wonderful experiences.

Life challenges all in different ways - I have a learning disability and I am hearing impaired, these things I can change - learn strategies to cope with the disability and wear a hearing aid.  I know so many different stories , some very sad and trying , others full of light and laughter. Why am I writing this? Sometimes, I feel like we need to pass on what we have, share what we know -- even if you don't need it, maybe someone else will. So for any of you in Toronto I am going to share some key resources for you , if you know anyone who would benefit -- pass it on okay? Because no one should ever feel alone, or that there is no one out there who understands what they are going through.

click on the link for access to outside websites :

Ministry of Children and Youth Services  website has links to get you started understanding things like funding that is available to families ( waitlist may be in effect for some) Read the where to get connected information - if the information is to hard to understand call a local social service agency ( or your doctor) and have someone meet with you to help out.

Connectability  This is an AWARD winning website, this contains FREE workshops, parenting connection groups, a VISUAL ENGINE ( awesome for those whose children require visual schedules etc) so much information packed into one website that is available to anyone aound the world. This website alone is worth a referal to a friend or daycare provider.

Respite   Everyone needs a break, or help sometime. This agency is the portal to so many things in Toronto Special services that it would take me days to just get through the basics. They help fill out all the governments forms and have tons of information to help get you on your way.

Surrey Place Centre  I know the people here, I love them. The dedication this staff have to services and people with special needs is outstanding. I say this as a member of this team and believe with all my heart each and every one of the people they love what they do, and the people they work with. Check out the website for more information. For Autism Services Guide - click Autism Services, SSP and then Community Directory.

Parent Books - A fantstic place to find all you could ever need as a parent - any question, any therapy, any video or learning need - check them out!

 I don't give advice in my job, I give information -- but this is my advice after 25 years working within the special needs field..

  1. Don't let anyone sell you a "Cure" - many people in efforts to "treat" a variety of disorders end up selling ( an making loads of money) on offering you "Hope". - If it is genetic, If there is no known cause - go the way of evidence based - and add a dash of not harmful and you and your child will be much safer and better off in the long run - put the money you saved into a savings account or RDSP.
  2. Let children be children, all work and no play = a missed childhood. No matter what their label, each and every one of the children and adults (well over 500 now) I have worked along side have need time to play. Period.
  3. Build your community - it doesn't matter who you are everyone needs other people - their is no shame, no guilt, no pride to big - when you want to be the best parent you can be, you need help to do it - friends, families, community -- we are all responsible- join a club, join connectability, talk to teachers, talk to service providers and say - I need help. It will come.
  4. TALK and then talk some more - to your partner, to your family, to a friend, to a counsellor, to a service coordinator, to your doctor - I don't care who - but talk, and don't censor yourself - it is frustrating, wonderful, heartbreaking, beautiful and draining being a parent, being a parent of a child with special needs - well it sounds like even more work to me. So Keep talking, and don't stop - we need to hear the stories, so we can learn and support.
  5. Make Time for yourself without your kids. Even if it is just in the little moments of the day.
  6. Grieve , but move on - the hardest times I have seen, are those who cannot get over feeling like they "lost" their child to a disorder. Some get lost in their own grief for so long, that they never see the beauty of their child looking back at them everyday. This breaks my heart - and I know that is hard to read, it is even harder to witness.
  7. Plan - One thing many staff within the field do not like to talk about is the future. There are reasons for this - we don't want to be the ones to say the things parents may not want to hear - especially in the early years when so many unkowns still exist for a childs future, we are also not able to see into the future. I am however going to say some hard stuff here - If you do not advocate for your child, no one else will - so learn how. Your child will go further in life if you speak up and for them when they need it most. You need to make plans for the future early on, by the time a child is 16 years old, if the longer term goal is a residential or group home placement - you need to start preparing the child and yourself as well as looking into the porcess by the day they turn 16.
  8. Know the inheritance laws if you plan to leave money to your child with a disability - learn how best to go about doing that - different trusts can be created to avoid loss of ODSP ( Disablitiy Program funding)
  9. Know your rights , our rights are protected under the Charter of Freedoms, Ontario Human Rights Code and for all those in School the Education ACT - thses laws outline your rights and responsiblities - know them as they apply to your child.
  10. Direct your treatement, Direct your goals for your child, until they can do so as independantly as possible - be active in their treatment, their schooling and recreation - evidence suggest that the more invovled you are as a parent the more successful your child will be.

Finally - Teach them about life, all of it, even the uncomfortable stuff - let them fail or succeed - before deciding for them and most importantly - teach them to independance right from the start - don't cause them to be dependant on your for anything more then they must be - DIGNITY comes from being in control of your own destiny - even if you have to be taught what that is. Then let them learn to fight and work for it on their own, by teaching how to stand up for themselves ( however that may look) and then teach them how to vote and elect responsible government.
I could go on and on and on - but today this is my wish - the few readers I have will tweet, and facebook and share and etc and we will have hopefully connected at least one parent to something :)

Smile tomorrows my Birthday - so pass along my wish -- that all who know or support anyone with special needs finds a friend in someone you know!

Happy 38th to me !

4 comments:

knitwit said...

This is great advice and I will definitely pass it along via my blog. Just bear with me--it might take me a few days!!
I liked what you said about grieving and moving on. Certainly there is a grieving process, but autism is such an interesting thing in that everything I ever took for granted with my neurotypical child is cause for intense joy with my younger son, so in a way, the experience has actually intensified the joy in my life.
Have a great weekend!!!

Melanie Jane said...

@knitwit thank you , love how you write intesnifeied the joy in my life - because that is the best way to describe the accomplishments they make and the look on parents faces - pure joy and pride.

In Real Life said...

Hi! I have come via @knitwit. I really love what you have written and wanted to say thank you for sharing. I especially liked how you emphasized the importance of play! I like how you have acknowledged the difficult aspects of raising a child with special needs, while maintaining a positive attitude and tone. This is what I try to do as well. Thank you for posting this. I would like to create a link from my blog as well, if that is ok with you - it may take me a couple of days though.
Have a great day!

Melanie Jane said...

@knitwit and friends -- absouletly share - that is what makes life beautiful and thank you for popping by @in Real life!