College search

Sarah lives in the USA and later this year her son AJ will be starting college. Below Sarah writes about the search for a college and a few things she has learned along the way.

AJ

AJ’s senior yearbook quote: “Never let your circumstances define you.”

At age 13 months our son, AJ, was diagnosed with a rare muscle disease. The neurologist told us he had myotubular myopathy. After 12 years of searching for a genetic diagnosis, it turned out that AJ actually had a disease that is a ‘close cousin’ to MTM known as titin-related centronuclear myopathy (also known as titinopathy). The neurologist advised us to plan for his future. “Save for college” she told us. And here we are, the parents of an 18 year-old, standing at the precipice of campus life. In the sometimes heart breaking world of rare disease we appreciate that not all families reach this milestone. We are profoundly grateful to be here and wanted to share our journey with others who may travel this path. Below are a few things we learned along the way which we hope helps other families. Best wishes to you in your journey.

Here’s a bit of background, AJ has a titin-related centronuclear myopathy. He attends our local high school. He uses power mobility at school and has a 1:1 nurse. His school day includes a hybrid of ½ day of online classes and ½ day spent at the actual school. It was a good fit for his interests and academic skills to pursue attending college. I should note however that although college seemed like a good next step for AJ, many people can pursue other paths to adulthood including other forms of vocational preparation. Please note that our search took part in the United States and I realize that high school and college situations vary by country. You may also want to consider whether a high school graduation plan is the right choice. Keep in mind that in the US, students in some circumstances can stay in their local school system until age 21. This may allow for a less rigorous high school curriculum as needed to balance rest, manage health, etc. and can include vocational training and preparation through age 21.

Where to begin

There are thousands of colleges and universities in the US, so it is a bit overwhelming to think about how to narrow it down. For us, we started with a geographic limit to our state of residence. Many of the social support services are state-based so it seemed like a logical parameter to stick with our home state. We started with a complete list of colleges in our state. We then asked the guidance counselor for some recommendations and attended a few college fairs, too. College fairs are one way to gain information about a variety of schools in a short period of time. We then physically toured 10 different campuses.

Tip
Start early. We started our first campus tours in Sophomore year. This took off a lot of the time pressure that some people face. AJ was also not the kind of kid who could attend a full day of school, then drive two hours away and do a two hour campus tour. So, we needed extra time, advance planning and took advantage of school breaks to visit schools.

Round one: Campus visits (x 10)

I really think for people with physical disability, especially wheelchair users, campus visits are a must. Most colleges now have fantastic websites with loads of information and even virtual tours but please do not rely solely on a website. Private colleges and older colleges can really have problematic accessibility and we realized that even public institutions that are supposed to be accessible, are really not. Just as an example, AJ’s dad looked at his own alma mater and only 25% of the buildings on that campus are accessible. Some of the accessibility issues we saw included:

  • inaccessible buildings (both academic and residence hall buildings)
  • tTour guides that took the group down a set of stairs
  • rugged terrain like cobblestone sidewalks, broken up sidewalks and hills
  • we found electric ramps for stairwells buried behind a table and chairs
  • one campus was on a cliff overlooking a river and the tour guide mentioned that the wind off the river in the winter was “really special” – he also noted that some winters they had to tie a rope between the buildings for safe travel on campus due to the wind and ice. So, not too wheelchair friendly.

We went on one tour where 10 minutes in, AJ realized that he did not feel welcome on campus due to physical barriers and he was ready to leave. These issues and more are just some of the reasons why it’s really important to do an in-person, physical tour of campus.

Tip:
Make sure to let admissions know about your accommodation needs before visiting campus. After a few campus visits we realized that group tours and open house days were not for us. It was just too hard to hear, see and keep up with a group in a wheelchair plus hearing aids. We started asking for either very small group tours or private tours. Most colleges will try to avoid this, because of the volume of prospective students, but I highly recommend you strongly request this.

Round two: meet with the Office of Special Services (x 6) and academic departments

After our 10 campus tours, we then narrowed our search down to re-visit six schools. On these follow up visits we set up two meetings, one with the office of special services (OSS) and one with the head of the academic department of AJ’s intended major. Each college will have a department whose job it is to create and support any accommodations needed due to a disability. Different campuses have different names for this department but you can find them on the website. Requesting these meetings was really informative. For example, for one of the colleges I left four messages and sent three emails requesting a meeting and no one from that office returned our call. That college was removed from consideration because with AJ’s high need for adaptations, we knew this lack of responsiveness ruled this school out of consideration.

The point of this second round of visits was to determine:

  • how responsive is the OSS department
  • what is the feel of the OSS department
  • do they have the resources to support our requested accommodations
  • are they able to meet his needs?

Tip:
If you are thinking about a college plan – start a document brainstorming accommodation ideas now. We started our list in Sophomore year and added to it as the years went on. Each time we visited OSS we picked up new ideas and added them to our list. We separated our list into different categories like academic needs, housing needs and medical needs. We went over this detailed list as a prospective student at six schools.

Well, what we found out by visiting these different OSS department was fascinating. We definitely got a feel for the campus culture of how accepting each one is to folks with disabilities. One gal told us how great she was at, “Fighting for her students’ accommodations to be followed” and how much “education” the faculty needed with understanding the need to follow mandated accommodations. She also alluded to budget constraints that would limit AJ’s access to needed modifications. So, this school and a few others were excluded from our list during round two.

Tip:
Visit OSS departments before you are accepted. It really was fascinating to see how finding the right fit for college was way more than academics and visiting the OSS departments was a big part of that. The window of time between acceptance and commitment is very short so we wanted to have these meetings set up well before that.

After this, AJ applied to and was accepted to five schools. After narrowing it down to two  top choices we went back again to meet again with OSS again and see the wheelchair accessible housing. AJ made his selection and we are all very excited.

Concurrent round: setting up supports

At the same time that we were searching for colleges, we were learning about
different government supports for people with disabilities. Some of these include:

For AJ, he needed to wait until turning 18 to access some services. Applying for
these services depends on many personal factors including assets/income, medical
needs and what state you live in. For us, applying for these programs was a critical
aspect of preparing for more independent living on a college campus due to the
need for personal care assistance/nursing services.

Last round: affiliating with the office of special services

After the admissions process, the last step includes affiliating with the college office
of special services. Accommodations and services are covered under different laws
in college versus high school. In order to receive services, a student must identify their
needs to the school and provide medical documentation to prove need. A student
would then work with the school to make an accommodation plan.

Tip:
Affiliate with your college’s office of special services sooner rather than
later.

Our family’s journey to campus life took place over many years with a lot of
advanced planning. Best wishes to you with your transition to adulthood path. We
are all excited for the adventures ahead.

A roll in the woods

This story first appeared in the Information Point newsletter Our World in 2013, when Sarah Foye told The Information Point about a visit to the Appalachian Trail.

The Foye family.

My son, AJ, age 12, has centronuclear myopathy caused by a mutation in the Titin gene. AJ was recently required to read a non-fiction book as part of his language arts class in 6th grade. He chose the book, ‘A Walk in the Woods’ by Bill Bryson. As a result of AJ’s condition, he uses a wheelchair for long distances as he tires easily and since holding books for long periods of reading can tire AJ, he often chooses to listen to the audio version. One benefit of him listening to books instead of reading them is that we can enjoy them together.

‘A Walk in the Woods’ is a hilarious tale of one man’s attempt to walk the Appalachian Trail. The Appalachian Trail is one of the longest continuously marked footpaths in the world, measuring roughly 2,180 miles in length. The Trail is located in the United States goes through fourteen states along the crests and valleys of the Appalachian mountain range from the southern terminus at Springer Mountain, Georgia, to the Trail’s northern terminus at Katahdin, Maine.

This amusing story opened up a world not generally revealed to people with physical disabilities and after learning about the Appalachian Trail through the book, we realized that a portion of it runs through our home state of New Jersey. After some research, we also discovered that a portion of the New Jersey Appalachian Trail has a wheelchair accessible boardwalk, so one beautiful fall afternoon we took a drive to that corner of our state and discovered a glimpse of the world described by Bill Bryson. We joked with people who passed us by that we pretty worn out after traveling all the way up from Georgia.

We discovered also that there are other sections of the Appalachian Trail that are wheelchair accessible, such as the Appalachian Trail on Bear Mountain and the Appalachian Trail in Vermont. Also that the United States National Park Service makes an effort to make many national parks wheelchair accessible.

So, that’s one thing AJ crossed off his bucket list: hiking on the Appalachian Trail. With some advanced research, many trails may be open to you, too. Happy trails.

The Hippocampe All Terrain Wheelchair

This story first appeared in the Information Point newsletter Our World in 2013, when Clair Tierney wrote about her experience of the Hippocampe All Terrain Wheelchair. 

Luke and Clair.

Luke is eight years old and has X linked myotubular myopathy. He lives with his mum Clair, dad Paul and sister Anna aged 11 in Coventry. Below Clair writes about her experience of the Hippocampe All Terrain Wheelchair.

As the years have gone by, taking our son Luke on holiday has become more and more difficult. We found that Butlins was the easiest holiday to manage as the staff were so accommodating and the apartments very large and spacious for our budget. Everything is flat and easily accessible. However, one of the hardest things was getting Luke down on to the beach. When he was much smaller and weighed less he was fine to carry down to the sea to see and touch the water and his wheelchair was small enough to pull on the beach, but as he grew and the wheelchair grew it was no longer possible. He would spend the time just sitting by the tent and building castles. Obviously we made sure he still had lots of fun but I couldn’t help feeling guilty as he watched his sister and dad go and have fun running along beach, playing by the sea, jumping over the waves.

We first saw the Hippocampe when visiting friends, they had entered a competition and won one. We thought it was brilliant. Luke had a go in it and he looked very comfortable. Our friends explained that it could be towed, pushed or self propelled and it was very easy to turn. It can go onto the beach, in water, on rocky ground and is even great for the snow. It was designed for disabled people by disabled people and is for any age to enjoy outdoor activities to their full ability. It was practical and lightweight and came with separate beach wheels which were very easy to change. We were impressed so we went home to research it but it cost £3,500, a lot more than we could afford.

So with supporting letters from our Children’s Community Nurse and occupational therapist we wrote to a few charities to see if they could help to fund one. They couldn’t. One said no because it is a wheelchair and Luke already has an electric wheelchair. Another said no because it was a leisure item not a necessity. We were frustrated by this because, yes he already has a wheelchair but he certainly could not use it on the sand, rocky ground, or in the snow and as for it being a leisure item, all children need leisure even the disabled ones but other children’s leisure is free, they just put one foot in front of the other and run like the wind. Unfortunately for our disabled kids, they cant do that, so we, the parents have to pay thousands of pounds for the same leisure. It seems cruelly unjust.

So, we then decided to research the possibility of hiring a Hippocampe for our holiday and came across Equipment Services in Somerset. They very kindly agreed to deliver it to Butlins and pick it up for the brilliant price of just £21 for the week. We were delighted. We can honestly say it was life changing for Luke, we all ran and played together on the beach and he said it felt brilliant racing around on the sand going in the sea, something he had never done before. If we had £3,500 we wouldn’t hesitate in buying one of these fantastic wheelchairs, especially as winter is now approaching and we have exactly the same problem in the snow as we do on the beach. We would highly recommend this equipment. It made our holiday and will look into hiring it again next year.

A visit to Slimbridge Wetlands Centre

This story first appeared in the Information Point newsletter Our World in 2013, when Mike Abram told The Information Point about visiting Slimbridge Wetlands Centre. 

Mike at Slimbridge Wetlands Centre.

Earlier this year Diane and Mike Abram visited the Slimbridge Wetlands Centre, a wetland reserve managed by the Wildfowl and Wetlands Trust. The centre sits halfway between Bristol and Gloucester on the estuary of the river Severn at Slimbridge and is one of nine wetland nature reserves located across the UK, each having its own unique natural habitat and wildlife. The centre boasts 325 hectares of protected wetlands and was the idea of Sir Peter Scott, also the founder of the World Wide Fund for Nature.

Inside the fox proof fence the reserve is home to a wealth of resident and migratory wildlife, it provides shelter and food for flocks of swans, geese and ducks in the winter and is an ideal breeding ground for waders in the summer months. At the reserve you can see rare birds from all over the world including hobby, kingfishers and redshank, as well as brown hares, dragonflies, wild otters, grass snakes and wild orchids. Below Diane and Mike write about their experience of the centre.

We visited Slimbridge Wetlands Centre earlier this year for the second time. As with our first visit, the centre left a very good impression on us, as it is very disabled friendly and as such, we wanted to share our experience with others.

Most importantly for us, as Mike’s mobility is now poor, the centre has a large number of buggies for its visitors, which we booked by telephone in advance of our visit. There is no charge for a buggy but there is a voluntary donation scheme with donations going towards the costs of maintaining and fixing them. Other attractions generally make a compulsory charge which is often much higher, so we were happy to leave a donation.

Being able to hire a buggy made pretty much the whole reserve accessible to us. There are boardwalks everywhere meaning a buggy user can get as close as anyone else to the wildlife at the centre including into the hides which have ramps leading into them. Being able to hire a buggy also takes a lot of stress out the day as there are no worries about falling or Mike being too heavy to support or push. We don’t have to worry about steps, stairs, slopes or explaining anything to anyone and are able to do the things we would have done before Mike’s mobility became impaired, so allowing him to re-gain his independence for a time. We are able to get around the centre, together as a couple, at a regular pace, which is great.

We enjoyed seeing birds from around the world with no barriers between them and us. We also saw wildlife in the ‘Back From the Brink’ exhibit, so called as the animals which are part of it have all come under threat at some point from factors like habitat destruction. The exhibit has beavers, otters, including otter cubs called Mini and Ha Ha (Di wanted to take these home with her), water voles, water shrews and harvest mice and is like going through a tunnel so making visitors feel as if they are in the same habitat as the small mammals that live there. We also went to the top of the Sloane Tower, which has a lift and provides the opportunity to see out over the reserve, the Cotswolds, the River Severn and the Forest of Dean.

In the summer the reserve runs Land Rover and Canoe Safaris and although we did neither, we know that the Land Rover has recently had a new lift installed into the trailer so that wheelchair users can enjoy this experience and we have been informed that the canoes are suitable for people with disabilities if they go with their carer and that reserve staff are always willing to help visitors too.

Overall we found the reserve to be very restful, like a walk through nature and probably the most accessible place we have ever visited.

International Musical Eisteddfod

This story first appeared in the Information Point newsletter Our World in 2012, when Mike Abram told The Information Point about attending the 66th International Musical Eisteddfod in Llangollen. 

Mike and wife Diane.

In July my wife Diane and I attended the 66th International Musical Eisteddfod in Llangollen.

The Eisteddfod was started in 1947 by Harold Tudor, with the aim of trying to heal, through music and friendly competition, some of the damage caused by the Second World War. Fourteen nations were represented at the first Eisteddfod which cost £6,000 to put on and the event has been held every year since.

Today the Eisteddfod costs hundreds of thousands of pounds with more than 4,000 musicians, singers, and dancers from around 50 countries, descending on Llangollen each year to perform and compete at the festival, uniting countries through song and dance.

This is the fourth time we have attended the festival, having previously seen Michael Ball, Lulu and Russell Watson perform there. This year we saw the tenor Alfie Boe best known for his role in the musical Les Misérables perform. As expected, the show included operatic and musical numbers but unexpectedly we were also treated to songs from the Eagles, Roberta Flack, the Rolling Stones, Bob Marley and Elvis.

I think it may have been a little noisy for the die hard Eisteddfod bunch but the rest of the 5,000 sell out crowd, which included Alfie’s family and Terry Waite, the ex hostage and ex envoy to the Archbishop of Canterbury, now International Eisteddfod president, were roaring the tent down. Di and I would go back again without hesitation if we could. Alfie Boe has an amazing voice and a great sense of humor.

Our tickets were purchased over the phone at which time we requested a disabled pass. This was important as it meant we were able to park in the disabled car park. If we were not there, we would have been in a field next to canal which gets very wet after rain. Disability access to the Eisteddfod site was mostly good for an outside venue with hard road and paths and ramps to all areas. One negative point was the path to the the main gate which was short but steep. A local car dealer had provided free cars for those with mobility issues who couldn’t manage the slope and these were available to take people up the slope, to the craft and food area or all the way to the tented performance area. However, you had to be able to reach the main gate at the top of the path, to request the car. In my case, Di was able to go up for me but if the person I was with had also had issues or if I had been attending alone, it would not have been possible to request a car.

While the concert was a great experience there was much more than just that to see. We saw competitors take part in a street parade around Llangollen with everyone dressed in national costumes and enjoyed the festival atmosphere in the Eisteddfod field, which included a craft market and food stalls selling English, Welsh, Indian, French and Cajun cuisine, the latter which did food tastings.

The festival was a terrific way to spend a beautiful summer day and one I would be very happy to repeat.

Eisteddfod parade

* Eisteddfod Parade photo courtesy of Howard ‘H’ Pimborough.

Disabled access at National Trust properties

This story first appeared in the Information Point newsletter Our World in 2011, when Mike Abram told The Information Point about his experience visiting National Trust properties.

The National Trust was founded in 1895 by three Victorian philanthropists concerned about the impact of uncontrolled development and industrialisation. Together they set up the National Trust to act as a ‘guardian for the nation’ in the acquisition and protection of threatened coastline, countryside and buildings.

Today the National Trust work to preserve and protect the buildings, countryside and coastline of England, Wales and Northern Ireland, in a number of ways, including encouraging everyone to visit and enjoy their national heritage, educating people about the importance of the environment and of preserving our heritage for future generations. They protect and open to the public over 350 historic houses, gardens and ancient monuments, as well as looking after forests, woods, fens, beaches, farmland, downs, moorland, islands, archaeological remains, castles, nature reserves, villages.

The National Trust are also committed to developing and promoting inclusive access solutions at their properties and welcome visitors with disabilities as Mike Abram has found to his benefit.

Mike says: ‘As my condition is progressing, I am finding it more difficult to get out and about, however learning about the National Trust access scheme has been invaluable to me. Whilst I can walk, I am slow at doing so and have to stop every few steps I take, however at 56 National Trust properties, I can hire a scooter for free to get around the grounds’.

Initially it took me a while to get the mind set between my ears right and it was an emotional decision for me as I didn’t want to admit I needed help but now I have accepted this, I believe it has given me some of my freedom back. Previously, I was tending not to go out because of the effort involved, the length of time it took me to walk anywhere and I was concerned about my safety – if I fell who would pick me up?

It was also difficult for my wife Diane and I felt I was holding her back but with the aid of a scooter, I can now visit most of the same places at properties that she can and she can now walk at a regular pace with me, as I can more than keep up with her in a scooter, meaning days out are less stressful, less tiring and I save much needed energy. Together, we have visited Berrington Hall, Croft Castle, Croome Park, Dunham Massey, Fountains Abbey (this was a very long site so having a buggy was a godsend), Hardwick Hall, Hidcote, Shugborough Estate and Speke Hall.

As Mike’s carer, Diane can also visit the properties free of charge. The National Trust admissions policy admits companions or carers, of a disabled visitor free of charge, on request, while the normal membership, or admission fee, applies to the disabled visitor.

Alternatively, to save having to ‘request’ a companions free entry, an ‘Admit One’ card can be issued. This card is made out in the name of the disabled person, not the companions, so there is not a restriction to taking the same person on each visit.

Mike says, ‘another benefit of the scheme is that I have been able to try before I buy. Properties have different vehicles for loan, so I have been able to try different sizes and type of vehicles, made by different manufacturers and I am now considering buying my own so I can get out and about even more’.

Mike is also aware of schemes at other non National Trust properties and says ‘Harlow Carr Gardens, was the first place I borrowed a buggy and the Wildfowl Trust at Slimbridge operate a scheme too. However, not all such schemes are free, at Chester Zoo for example, there is a charge of £10’.

Visit the National Trust for further information about
their disability policy and to download copies of their access guides.