Forum Replies Created
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Posts
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Relationships
- Dating Night – for people with disabilities to meet people
- Not easy – whether family, dating or worker relation. It takes time and patience
- Want a say in who is in the relationship, who is in my family, who is my worker.
How can we manage stress and give ourselves some relief from our role as caregivers?
- Doing something for ourselves is critical. I have to take care of myself with guilt.
- Make /take time for ourselves. Make sure we find someone to give us that break. Examples: respite services, programs and groups our child can take part in and enjoy. If they are happy – I feel happy and more able to take self-care.
- Strategies: glass of wine, naps walks in nature, walking the dog.
- Mindfulness, prayer, meditation, anything that helps me put things into perspective and gives me courage and strength. Helps me prioritize what is important and let go of the rest. And it helps me let go of others expectations.
- Talking to other parents who truly understand.
- Spend time with friends and not talk about our kids at all.
- Seeing myself as a person other than just a parent. Think about what other things : my interests, my hopes as a person.
- Getting Respite:
- Apply to DSO
- Homemaker services
- Case co-ordinator
- Connecting persons on the ASD spectrum with the arts in the community
- Creating connections
- Making autism more familiar to the community –demonstrating strength not weakness.
- Seeking respite – just call, speak up and have your needs met.
At the end of each discussion at the Café participants were asked to come up with the top 3 take away points from the discussion. They are listed below for each topic discussed. Feel free to continue the discussion on any of these topics or any other topic of interest by posting a comment. Remember : you must sign in ( or register if you have not already )to post a comment.
I am relaying a response from Christina Fong:
Our son has had to take pills all his life, so from a very young age (before 2 yrs old), we’ve been putting his pills, one at a time, into a (generous) spoonful of apple sauce. We spoon feed it to him and he slurps it down, one pill at a time. We make sure he knows it’s medicine we are putting into the sauce so he won’t chew or bite down, and it’s something we administer to him, he doesn’t do it for himself.
2 important notes of caution about splitting pills with a pill splitter:
1) Sometimes a pill can be quite large and appears it needs to be split in half before swallowing. Don’t do it! You will end up with 2 half pills with 8 sharp corners and can actually cause pain when swallowing. Use a generous amount of apple sauce and ready a glass of water or juice to chase the whole pill will be a better method.
2) Some pills are CR (controlled release) and should always be swallowed whole, they should never be split or crushed — even some nurses in hospital aren’t aware! Make sure you check with your pharmacist or doctor before deciding to crush up a pill, thinking it is easier to take. To do so will diminish the effectiveness of the medicine.
Christina Fong
Hi Jenna,
Yes, they can buy their own. However, it is always good to talk to someone who knows about cell phones to help you make a decision about what cell phone and plan to get. It would be good if this person came with you when you buy the phone. It can get confusing and it would be helpful to be able to turn to this person and ask what they think. You are still making the decision but you would have more information to make the best decision you can. The salesperson might try to sell you a phone and plan that is not what you want or need.Here is a fantastic interview with Mark Wafer talking about Enabling the disabled – Working at Working that was shown on TVO’s The Agenda.
Mark Wafer owns seven Tim Hortons franchises in the Greater Toronto Area. Deaf from birth, Mark is more than just an advocate for people with disabilities. He understands the business advantages that his more than 40 disabled employees bring to his bottom line. Mark Wafer sits down with Steve Paikin.
Here is some information from Christie-Ann, an Early Childhood Consultant who has gone through the process:
I found the process a bit confusing and overwhelming, so I typed up a brief description of the steps involved in the application process.
I hope that helps.
In my experience, families have had most success when escalating these issues to a government level. To my knowledge, that has been the only successful instance where a change in decision has been made (unfortunately).Contact Niagara Independent Review Process:
1.Parent submits in writing (writing, fax, email) to provider (in this case, Surrey Place Centre) that they would like an internal review of the decision.2.Surrey Place Centre will then send the registration form/pamphlet for the request. As well as obtain parental consent to exchange info with Contact Niagara.
3.Parents submit documentation they want to be considered (e.g. changes taken place since decision, or things not submitted yet, such as letters from diagnostitions, from family, professionals, video, etc).
Provider (Surrey Place) has 10 days to make a decision. If they decide they made the right one, then family must tell them they want an Independent Review. Surrey Place then sends all info to Contact Niagara.4.Contact Niagara takes all identifying info from the forms and submits them to a third party for review.
Christie-Ann
Hi Afreen,
Here is a link to the “Contact Niagara” website.
It is an independent review process that looks into situations such as these.
http://irm.contactniagara.org/en/homeGood Luck,
Hi Wendy,
ConnectABILITY.ca has a list of all the parent support groups in Toronto. http://bit.ly/familysupportgroups
Hi Tammy,
Here is the link to a useful article titled Creating Employment and Training Opportunities in Your Community
Pilot Parents
Pilot Parents is a support group consisting of parent volunteers who have a child with an intellectual disability. They provide emotional support and first-hand knowledge to parents whose child has been recently diagnosed with an intellectual disability.
Here is Bonnie’s Story:
A couple of months ago, I was asked if I would call a young mother who was pregnant with a baby who had Down syndrome. The mother had also found out that the baby had a heart condition. I hadn’t been active with the Pilot Parents for years, as my daughter is now 27 years old and life has taken us into different directions. I said “yes” because the situation was very similar to when my daughter Jenny was born, except back then we didn’t know that she had Down syndrome until after she was born. We found out the day after her birth that she also had a heart condition and they couldn’t tell us at the time how bad it was.
It’s funny, because you think all that is behind you, and can’t affect you anymore, but no, all the feelings and memories come flooding back, and it seems like it just happened. Except now you are reflecting over many years and I know how things turned out. At the time you don’t know what to expect and are scared to death, on the outcome. It turned out Jenny had a hole in her heart – it affected three out of 4 chambers in her heart and the mitral value was split in half. So essentially the blood was swishing around the 3 chambers and eventually some would make its way to the fourth chamber and out to the rest of her body. It took us 11 long months to get Jenny up to 10 pounds so they could operate. She was born at 7 pounds.
Like I said reflection is a lot easier, and knowing Jenny as an adult is amazing. She has grown into quite the young independent woman.
So I emailed the family and told them, ”Congratulations on your pregnancy, and welcome to the wonderful world of children with Down syndrome.” As it turned out we live very close to each other. The mom has an amazingly positive attitude. She had a hard time getting pregnant and was thrilled. Of course the worry is there about the health of the child, but knowing ahead of time, helps to prepare the doctor at delivery. I invited her to come to the Parent Share meeting and meet other moms who have children with special needs. The mom came to the meeting and felt very comfortable to be amongst a group of woman who could immediately relate and everyone was relating their experiences and things to do.
I told her about the wonderful things Jenny is doing and invited the family to come visit her at her home. Unfortunately we have not been able to do that as yet, holidays came, Jenny got sick for quite awhile and colds and things kept coming in and out of the house. We still plan to get together, so that she can see how well adults with Down syndrome can do!
I received this email from the family:
“As you may recall, we are expecting our Baby Boy early March and although finding out he has Down Syndrome and some heart issues has been hard, we were lucky to have connected with you. Thank you for answering all our questions, sharing your experiences and giving us hope.”It’s amazing how the little things can mean so much!
Bonnie Heath
Here is a very touching story of 2 young brothers…one with special needs.
Tammy, what a great idea.
Here is one that we profiled in Community News – Nothing Without Work: Josh Masters:
http://youtu.be/-TfY8-1O6awDoes anyone else know of other inspiring videos?
Hi Sumari,
Here is a good post about de-mystifing stimming by Anabelle Listic, a 27 year old artist who has autism. She begins ” I have been asked by many parents, “How do I get my child to stop stimming?” The short answer is: You don’t. Allow me to explain why:
Click here to go see the rest. https://www.squag.com/2234/
Check out the Community Participation Supports page for more information on Active 8 and other programs in Toronto. https://connectability.ca/2012/…..-supports/