I felt misled

This morning my eye caught a post from a special needs page that mentioned hope for the continual grief special needs parents experience. I chose to read it. Perhaps because of where I am at this stage of things, but I actually felt ‘misled’ when I read it! It felt weird having that thought/feeling about this article.

The truth is, parents of special needs children deal with unique grief from the moment of diagnosis of their child(ren). It’s a different type of grief and many don’t understand it. Parents of special needs children can get struck with grief at any moment and it’s a cycle that happens again and again. They don’t always go through the regular stages and find resolution.

What made me think I was misled was that when the article asked what grief experiences have snuck up on you lately, the answers all had to do with children that were still alive. I was taken aback as I had thought the article was going to be about loss. The loss of a child. Although the article was still true with it’s content, I felt misled.

We as parents have been grieving for our children all along. It’s difficult to explain but there is a different type of grief associated with raising a child with special needs. Some may say it’s not grief, but the reality is that it is a type of grief even if we don’t want to admit it. The grief we experience is sudden situations and/or circumstances that remind us that our child(ren) aren’t able to do certain things as their peers do. They aren’t at ‘level’s’ they should be for their age etc…the list could go on…

To us, our child(ren) is/are perfect. Even with our own imperfections, we are all perfect in God’s eyes. We are who we are for a reason and there is a plan for each and every one of us. Even as parents, we know our children are different, but this is normal for them and normal for us.

I hadn’t really thought about, that to a degree I was also grieving during those years. I never looked at things Patrick couldn’t do as a loss though because there were so many other things he could do even if it had to modified for him to do it. He smiled so much and so often, how could one look at it as grief?

The grief now is SO different. I have those moments when something all of a sudden strikes me and I am in tears, wishing with all my might that Patrick was still here. That I could hear his laugh, see his smile, hold his hand and get a hug from him.

For myself, I feel a loss in my self esteem and confidence. I hesitate to make decisions on my own now, which sounds odd because I had to make decisions ALL the time with regards to Patrick’s life! I’ve gained weight (even watching what I eat) and can’t seem to lose the weight as easily as I could before.  Tired feels like part of my vocabulary now. I feel like I’ve been running non-stop for almost 17 years, and now my body seems to feel like it needs time to recuperate from all those years. It’s frustrating because all these losses I feel, I didn’t feel before when Patrick was here.

I think I feel like Patrick made me strong. He was strong, and maybe he felt I was too and we fed off each other that way, and it worked!  We were a great team together!

As many of you know we started Grief Group a couple weeks ago.  With many being away this week, group was cancelled, but next week I am going to share this with the other parents attending and get some feedback and thoughts on this.

Let me finish off though with this…

Although the loss is huge, the JOYS are many!  Recalling the joy of who he was, how he interacted with others, the way he made people feel and especially how happy and proud he made us feel…that will never go away!!

Focusing on the JOYS makes the loss a little easier each time.  Sharing about him makes the loss a little easier each time.  Some may tire of hearing about him, but we never will!  His impact and legacy has helped and will continue to help many people and for that we are truly grateful!!

Thank you to everyone who has been so supportive, loving, kind and generous.  We couldn’t have done it without you either.  Thank you for being a part of our lives, whether near or far, we love you all!

JOY!

His laugh was infectious! He loved to laugh!!

JOY

Patrick & Bruiser!

Family JOY

Playing with the camera on Patrick’s iPad. He loved seeing Auntie Rosanne!

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Passports for Children with Special Needs

So…as I mentioned previously, we had passport photos taken the other day.  With the strict guidelines Passport Canada has regarding photos, I knew it would interesting.

Passport Canada has a page with general information for persons with disabilities.  You can take a look at it here. (Note:  I was quite surprised to see the address/URL for the page uses the word handicap in it.)

I’d like to know what YOU had to do, if anything, for your child(ren) with special needs to get their passport.

I called Passport Canada ahead of time to inquire what I would have/need to do if we couldn’t get a photo with his mouth completely closed.  They informed me I would have to get a letter from a Doctor explaining why.  Okay, I got on the phone with the Ped. Dentist and asked if they would help and provide a letter.  I explained the circumstances and situation and today I got a call back telling me the letter was being sent off in the mail today! THANK YOU Dr. Weinberger!! 🙂

During the photo taking, the photographer had asked me to remove Patrick’s glasses for the glare.  No problem, I took mine off for my photo as well.  She kept asking him to look at her or the camera, and he was, but it doesn’t look like he’s looking at you.  I told her he was and also asked if that would be an issue for their guidelines as well.  She wasn’t sure.  I called Passport Canada (PC) again and asked if there would be an issue with his eyes.  She informed me it would be up to the discretion of the individual office.  Needless to say, I’m looking at getting a letter NOW instead of later, just in case!  It also dawned on me that all children over the age of 11 have to sign their own passports, so I inquired about that as well.  Again, another letter from a Doctor is needed stating why he is not able to sign his own passport.  Patrick can write PAT, but not his full name, nor could he do it in the small space requested by them.

All of this will be worth it to know and see how much he will enjoy the trip! 🙂

Have you had to do anything in particular to get a passport for your child(ren) with special needs.  What do you think about the process?  Do you think they ask too much information?  Do you think all the letters are necessary?  Do you or did you have to pay for these letters?

Please share your experiences, I’d love to hear them.

Have a great evening!

Impressive Disney Planning – Cont’d

For all the changes that we’ve had to make in the past week, our travel agent has been wonderful!  She has been quick with information, bookings, reservations and insurance stuff and more.  The girls are excited and Patrick is waiting for me to make up a countdown calendar to put on his wall.

4 of our sit down meals are reserved, one for each park, including two character lunches!  One with Winnie the Pooh Gang (whoever of them can make it) and another with one or more of Mickey’s Gang!   The other two reserved meals are suppers, one being a Chinese cuisine and the other Italian.  With the Dining Plan we have, (we have the dining plus plan for free), we get one table seated meal, one quick serve meal and one snack each day we are there.  Heather, our travel agent, called me today with some great news!!  All the restaurants we have our reserved meals with, will accommodate Patrick’s diet as well!  How awesome is that!! 🙂  They will chop/puree up Patrick’s meal for him/us! How great is that?!  That will make some of our meal-times easier! 🙂  We’ve been informed to inquire at any others we attend for meals, as they may accommodate him, but those are not guaranteed!  Regardless, those 4 meals still help.

We’ve been given information about accessing many of the attractions at the parks with regards to accessibility and their alternate entrances for persons using mobility devices.  These entrances also allow a maximum of 6 people from the party including Patrick to stay together.  Since we are now 5 again, we can stay together and enjoy the attractions together!

A couple of the attractions we are looking at, are Kilimanjaro Safaris and the Jungle Cruise, both I know Patrick will love as it will give him opportunities to see many different types of animals.  He is also excited about going on any attractions that are train rides.

Today, we went for passport photos.  I had already called Passport Canada and inquired about what would happen or need to be done if we couldn’t get a photo of Patrick not smiling and without his teeth showing.  They said I would need to get a letter from a Doctor explaining why.  So in the meantime, I’ve put a call in to the Ped. Dentist for a letter with an explanation and why I’m requesting one.

Everything about the trip is booked now.  Plane tickets, Insurance, Resort, Transportation to and from the airport, Park tickets and some of our meals…everything is booked and paid for.  The reality of it is starting to hit me!  All the little pieces of information that we’ve been given and all the answers to all the questions we’ve asked have been answered and answered quickly as well.

I’m a little extra tired tonight, so I’m going to end here for now.  I will post more updates soon.

Thanks for stopping by and keeping up to date with us.  We love to hear from you too!

Have a wonderful evening! 🙂

 

Disney Planning Cont’d

Well our numbers have decreased, but we are still going!  Flights are booked and the rest will be finalized next week, just waiting for confirmation invoices and info.

I must say I’m a little impressed with some of the information that is available on the Disney site regarding accessibility and information for multiple disability types.  I will also say, it involves ALOT of clicking to go through everything!  I’ve printed out over 60 pages of information to go over rather than having to click around and find my way back to it all.  Here are some of the pages on their site:

More clicking throughout these pages to get more detailed information is required, but these pages are a place to start.  They have printable guides for each of the parks, which when printed out, is quite small in font size.

You will read quite a bit about how you should plan ahead as much as possible, and I completely agree.  For myself, I like to be as prepared as possible, know exactly what we’re getting into and how to best organize things to make things as relaxing and enjoyable as possible for everyone.

We are fortunate enough to have both respite workers coming with us to help out.  It’s amazing how much arranging and planning you have to think about to pull a trip like this off.  I’ve been doing the bulk of it thus far with laying the ground work and making sure we will be in accomodations that will work for everyone, especially Patrick.  Mom has appreciated this very much.  It’s a little more stressful, for me anyway, having someone else do it when they don’t ‘live it’ like you do every day.  I’m sure many will agree, when it comes to things like this, you feel better knowing that the necessary things are in place to ensure a good time when you have had input.

We have a great travel agent!  Heather has contacts and has worked with the people who arrange the Sunshine Trips for the kids.  She has used those contacts to help plan our trip as well.

I would suggest, as would Heather, to make sure you double check your booking and explanations of what type of accommodations you need and are getting.  We have found Disney really needs to update their website and look at some of their terminology.  They also need to better train their agents.  Twice Heather has called to double check bookings and been given mis-information.  We had to change our accommodations this morning as the accessible room we were given at one resort was not what they told her yesterday and it didn’t work for us.  We are thankful she has been diligent and making sure everything we need is in place for us.

Medical insurance is another thing we needed to look at.  Patrick had done so well for about 6 years, but in the past year, his health has not improved back to what he was previously.  For those who don’t have coverage with other companys or through work, there are some fairly strict guidelines to go with the coverage.  It is wise to check into exactly what you are/will be covered for to make sure there are no surprises.  One of the girls has medical insurance through her work, but still needed to have the coverage added for this trip.  Basically for us, as long as Patrick doesn’t end up in the hospital or have any change in medication between now and the trip, AND it isn’t for the same reason’s he was just in for, he will be covered.  Keep your fingers crossed, because if there were to be issues, they would likely be for the same issues.  Send a few prayers up for him 🙂

Heather has also looked into extra luggage for us for some of the extra stuff needed to bring for Patrick, and also found out I’m able to bring the Chopper with us as long as it’s in the checked luggage.  With Patrick’s medication needing to be refridgerated and such, they are supplying a small fridge for us at no cost because it’s for medical needs.  They have arranged accessible transporation for us from the airport right to our resort and back again when we leave.

We are working on some other details while waiting for the final confirmation numbers, but things are moving along fairly well at this point.  Aside from the ‘hiccup’ with the accommodation (which has been sorted) and the particulars of the medical insurance (didn’t surprise me), we are quite happy with things so far.

Our travel time falls during a week that offers a free Dining Meal Plan, which is great, and as recommended MANY times about reserving your sit down meal as far ahead as possible as they fill up quickly, Heather will do that for us next week.

Next week is passport photos for Patrick and I, and going through the information I found and printed to see what attractions and rides are accessible, which require transfers and which one’s Patrick would be more interested in seeing.  We already know he’s very interested in Animal Kingdom, so that’s a given. 🙂

One more note before signing off for the night.  My sister’s SIL (sister-in-law), gave me a site to take a look at also.  They also have some great information and more photos of rooms and attractions and accessibility (Disney has very few accessible room photos, and I’ve not seen any accessible ride/attraction photos at all so far).   allears.net

It just so happens, when I shared this site with our travel agent, her contact with Sunshine Foundation, gave her the same site 🙂

Feel free to email any comments, suggestions/feedback.  I’ll be happy to reply.

Till next time…. 🙂

 

 

 

 

 

 

Disney, here we come! Start – End!

So this is going to be a journey in itself.  A trip from which to learn and grow from.

Patrick and I have travelled before, but only to Nova Scotia.  This trip will be much different!  A farther distance, another country, a busier place, no comforts of home so to speak.  Not having all the things that make life more accessible and easier will be interesting.

This is a family trip.  8-11 of us are going.  My mother has felt very strongly the past while about doing a family trip.  The time has come to do it and now the organizing and planning has begun.  We’ve been researching for a while, but time is flying by and things need to be put into place now.

We’ve been lucky enough to have been referred to a local travel agent who has experience with booking with the Sunshine Foundation, so we are confident she will be able to provide us with the information we need and to help us book the most accessible trip possible for us.

Already there are so many things to think about.  Accessible rooms (what’s accessible for one, isn’t necessarily for another), washroom facilities (showers etc), meals preparation, laundry facilities, extra luggage for the extra necessities needed for Patrick and also looking at what type of things Patrick will be interested in seeing and how accessible they are.  This is just a start.

It’s not just Patrick that needs to be taken into consideration as I mentioned earlier, there is a fair size group of us.  For me though, making sure we have access to the things that will make this trip more enjoyable for Patrick and I and in turn everyone else as well.

I’m thankful I will have some help, not just from family, but Mom has told me we will be bringing one of Patrick’s respite workers with us to help me/us out as well.  That gives me some relief as well.

I will be blogging about our experience(s) and how things are going with our travel plans and the actual trip as well.

If you have been to Disney World in FL and have first hand experience with travelling with a child(ren) with disabilities, I’d love to hear from you.  Perhaps we can all learn from each other on a variety of things trip and travel related.  🙂

If you have any tips, suggestions or comments on anything you’ve experienced or think I should know or take into consideration, please share.  I’d love to hear from you.

For now, this is the beginning.  Passports need to be gotten for Patrick and I.  That’s another thing in itself, and the bookings will be done within the next week.  For those wondering when we are looking to travel, it’s mid to late January or early February.

Hope you enjoy following our journey, we look forward to sharing with you! 🙂

Wish Granting Organizations/Programs – What do you know?

A communication summer helps prepare for school!

Patrick’s Summer – 2010

Patrick had a busy summer.  Being a child that uses an Augmentative Communication Device called a DynaVox, Patrick was able to attend a new summer camp this year, Word Warriors.

Word Warriors was a 7 week camp, meeting every Tuesday morning at Thames Valley Children’s Centre for children using augmentative communication devices, to work on Core Vocabulary.

Core vocabulary is a relatively small number of words that constitute the vast majority of what is said in normal conversation.  With a few hundred words, a person can say over 80% of what is needed (Vanderheiden &Kelso, 1987).

Each week 2-3 core vocabulary words were used as ‘passwords’ to enter the room.  Stories and games were read and played that incorporated the words for the day, as well as words that were previously used.  The children were encouraged to participate as well, by asking and answering questions using their core vocabulary.

They had a great time!  Patrick really enjoyed and looked forward to going.

Patrick also had the opportunity to attend a Drama Camp again this year.  His first time was in 2008, this is his 2nd year.

This program is put on, again, for children using Augmentative Communication Devices, through Thames Valley Children’s Centre and The Original Kids Theatre Company.  There were 2 sessions, morning – for those attending for the first time, and afternoon – for those who have had experience already attending.

Patrick attended the afternoon sessions, going down to the theatre with one of his respite workers via para-transit, Monday to Thursday for a week.  Friday morning they put on the performances.

They did 3 plays.  Alice in Wonderland, The Right Nest and Wombat Stew.  Patrick played March Hare 2 in Alice in Wonderland, the Husband Bird in The Right Nest and the Emu in Wombat Stew.  Each child had their lines for the plays programmed into their communication devices prior to the camp.  Patrick reminded me everyday to go over his plays with him, so he could do his lines! All the plays were written and directed by one of the Original Kids.

Each child was paired with one of the Original kids for each play to help them along when necessary.  The first 3 days were spent rehearsing the plays.  Thursday was dress rehearsal day.  Friday morning both groups, morning and afternoon, put on their plays for family and friends at the Spriet Family Theatre, downtown in the Covent Garden market.

All the kids had a great time!  They received a certificate, a poster, a shirt, a program and a gerbera daisy.  Wonderful memories indeed!

These camps this summer have helped Patrick a lot with also preparing for school.  Using and getting more familiar with some core vocabulary will help a lot in communication, not only for school, but where ever he may be/go.

We have started working on our school time schedule for mornings and bedtimes to help get a head start on the routines he will be using for school.  He’s still tired, but there’s still a week to go.  He’s been counting down to school for 2 months!  We have a calendar I made up and we’ve kept track of all the camps, weekends with his Dad, appointments and when back to time is.  We mark each day off with an “X” as it passes and count how many till each event, including school.

He is excited and happy that school will be back soon!  He can’t wait to see his friends and the EA’s!