Archive for the ‘Tips and Favourites’ Category
There comes a point where parents have to make decisions for their child’s welfare in the event the parents pass away leaving behind the surviving child. They determine who will get their child, how the child will be cared for, what financial means will be there to support them, who will manage the finances, and who will protect the child’s best interest.
When a child has a disability, Wills, Trusts and Estates become more complicated. The decisions you make in your Will, how you set up a Trust, or how your Estate is managed can have long term effects on your child’s disability pension. Just doing a home will kit most likely won’t be enough.
There are two sources I found useful to contact in BC, Canada that offer online courses in setting up and understanding Wills, Trusts, and Estates. Plan (Planned Lifetime Advocacy Network) and ACT (Autism Community Training). Plan has both in-person and online courses to guide you through the steps of preparing a will and estate planning. ACT has an online video Estate Planning for Families Who Have Children with Special Needs in BC. Both Plan and ACT also discuss the Registered Savings Disability Plan. (Low vision users please click on the full organization names listed above for links)
Whatever decisions are made, even if they are not ideal; it’s better to have something documented than to have someone else make those decisions for you.
It’s that time of year again. Like so many other people, today I did the holiday hustle. You know, it’s when you park your car, step out into the masses and suddenly you’re shot into what otherwise resembles a pinball machine. Your ears buzz with background noise. There are moments you score and find exactly what you’re looking for. In your conscience you’re rewarded with Ding Ding Ding- Way to go!
In your quest for the perfect gifts, you weave left and right, you turn, dodge and duck past the other shoppers gaining just a few minor bumps. But wait, there’s only one of your wish list items left on the shelf. You scramble but someone beats you to it. That Ding Ding Ding quickly turns to Sorry, try again later. Oh, so close.
Despite my now tired feet and need for a soothing shot of Baileys Irish Cream, I didn’t do too badly today. I would have liked to be the organized shopper who was done their holiday purchases last month, but that wasn’t meant to be. My recent trip, followed by my surgery, made shopping low on the priority list. My biggest difficultly however, is always groceries.
Grocery’s is a must for the festivities. Shopping for them can be just as nuts as shopping for presents. It’s really a challenge to push my child in her wheelchair and manage a grocery cart or basket. We were definitely I sight to see when I was still on crutches. The looks of shock or the odd chuckle from passers by made me laugh every time. What else are you going to do? Though this juggle borders on humanly impossible, sometimes it just has to be done. Otherwise, I’ve often had to leave my child with a sitter or come up with some fancy contraption to use in the cart.
Recently my friend sent me a link to a potential cure for these shopping challenges. Click here to check out Caroline’s Cart. It’s an innovative idea that could definitely make things easier for some parents of children with disabilities. I’m not sure if Caroline’s Cart is available in Canada yet but where there is a will there’s a way. If you like this, spread the word or share your ideas on what works for you and yours.
Good luck on your holiday hustle.
If there is one thing I’ve noticed over the years, parents of children with disabilities are extremely determined individuals. We fight hard and pursue every option until we get our children the best possible treatment or service. Lack of funding, staff, understanding of our children, and so on, prevents us from giving our children what they need quickly and easily. We are frequently forced to look elsewhere for help. In rural areas, there are even fewer options and the ones that are there, might not be suitable. So, we travel hundreds of kilometres away in the hopes of improving our child’s life.
I’ve done a few long trips now for services my daughter could not get at home. As always, it’s a struggle to cover the enormous financial burden it can place on a family. Here are a number of options to assist with travel costs that you may not be aware of. Some of these options are available for anyone with a disability. Read the rest of this entry »
For several years, my child has worn ankle foot orthotics,otherwise known as AFO’s. Although they clearly provide support in the areas she needs most, I’ve often wondered if they hinder other muscles; a debate I’ve had with her physiotherapist. After talking with several parents of children with cerebral palsy, I realized this is a common concern. Many parents have opted to go outside of the conventional way of thinking, and chose to use orthopedic shoes that provide a brace like support, plus do routine stretching exercises. Only you and your child’s therapist or doctor can decide what is suitable. Below are some of the companies suggested to me for orthopedic shoes or shoes that support AFO’s. Read the rest of this entry »
A few weeks ago, I wrote a post BC Summer Camps for Children with Disabilities. There are some great options for children in British Columbia, but what if they simply don’t meet your child’s needs, or your needs for your child? How far are you willing to go to send your child to a suitable camp? Well, it appears I’m willing to go a long way.
I chose a camp that should be both fun and therapeutic for my child. I’m a strong believer in the benefits of regular therapy. I also believe it is sadly becoming a rare event in the current system. Schools try to incorporate therapy into the child’s daily schedule, but have little time. They are also structured for consult only therapy support. Then there’s the problem of the therapist’s caseloads being too big or ill managed. The end result is the parent has to work that much harder to support their child. The support they did have during the school year is often gone during the summer months. Read the rest of this entry »
A few years ago, I went through the process of choosing a vehicle to be converted for accessibility. It was not an easy process and there were many decisions to be made that aren’t normally thought about. Though I did almost everything right, I still ended up with a lemon and learned a few important lessons. I thought I would share some tips to have the best success in purchasing a vehicle for an accessibility conversion and choosing a company to do the conversion. Read the rest of this entry »
Summer is quickly approaching, for some not fast enough. It would be great to go on that all- inclusive get away but with today’s economy, perhaps purse strings are tighter than usual. Finding accessible vacation spots or manageable trips when you have a child with special needs is a whole other can of worms. There are lots of summer activities for children with disabilities that are fun, rewarding and budget friendly. Here are some ideas…. Read the rest of this entry »
For several years, I’ve been trying to get an accessible school bus for my child to attend school. It’s been a struggle and a headache that I couldn’t seem to get rid of. I’m proud to say, my headache is just about gone. Finally the school district has agreed to provide my child with an accessible school bus starting next September. As I write this, I picture my readers sending me that high five through the screen of my laptop. Yeh! A battle won!
When it comes to getting services for a child with disabilities, it’s no easy task. We constantly hear about hands being tied, case loads being too high and funds not being there. I’m not a mother that can view those responses as acceptable. Giving up is not an option when my child still needs the support. So, if you are struggling with an issue involving school or similar services for your child, I’ve decided to share some tips on how to get the right people to listen. Read the rest of this entry »
Are you thinking about your child’s options for summer? Maybe you’re considering camp this year. Summer camps for children with disabilities can vary a great deal. Depending on the child’s needs and level of care required, a parent may have many or few options. Like anything special needs related, it often has to be planned out early and sometimes families have to seek out funding for these programs. Parents might be looking for a camp that focuses mainly on inclusive play with peers, while others look for fun, social and therapy combined.
Researching summer camps can be aggravating for parents. There are lists all over the Internet for summer camps but many don’t offer programs for children with disabilities or special needs. Some camps have to be booked much earlier and you may already be too late. Below are a few BC summer camp options to help in your search. While I cannot recommend any specifically, I hope you will find this list helpful. Low vision users, please click on the camp name to link to their site. Read the rest of this entry »
IPads/IPhones/IPods can still have challenges for toddlers and children, youth or adults with or without disabilities. Here are some possible solutions to common problems: (Low vision readers, please click on the product name for links.)
The Home Button:
Having a challenge keeping your child focused on one App? Do they constantly hit the home button only to need your assistance after? Do they use the IPad for communication but keep exiting the program in search of something more interesting? I have recently heard of some options that might help. Check out Paper Clip Robots – BubCap Pro. The thin self-adhering aluminum tabs can be used on IPads/IPhones/IPods. It covers over the home button making it difficult for young children to constantly exit apps. The home button can still be used with a much firmer press. Of all the types of BubCaps on this site, the aluminum “Pro” works the best. Read the rest of this entry »