We spoke about many things that have changed once we learned about Luis' condition and how we have also changed. There is one thing to read advice and try to prepare in advance, it is quite another to live it. Caring for someone presents it's own challenges as it is a learning journey and you cannot always plan it. Individual needs greatly affect this.
As a result we decided to come up with a list of things that are top of mind, we feel ought to be considered when you learn about your disability, your child's or family member, it could perhaps be your friend who is considering these due to their diagnosis. So here we are in no particular order:
Support
Time
Physical and mental readiness
Isolation
Access physical and mental
Location
Support
How much support is available both from a family and a local authority perspective. From our experience the local authority has many things in place to aid those have additional needs and their families. This can be support groups where you can sit and listen or engage as you feel to, it may surprise you how many others feel similar to you, or can relate where families without disabilities cannot.
That last sentence almost feels too obvious but at moments when things feel at their worst, or you feel like you cannot take anymore, or you are new to it all trying to sink everything in, the simple things can escape us. I mentioned in another blog (Tips for the Summer), making use of things in place like Shorts Breaks which are government funded.
If you are unaware where to start then I would recommend using your local authority website it is generally well sign posted, additionally there are many family owned sites and orgs similar to ours that also direct you quite well.
Do you have family, and if you do are they the kind that will show up when you need them, are they offering both the physical and the mental support you need. If they are that is great and it really helps to have it. If not then it can be difficult and many times you do not know how you will do it, how you will continue as daily fatigue sets in. As I mentioned above there are hours in place to offer some relief, they may not always feel like enough but try getting as much benefit from it as you can it may be the difference you need.
Time
This is quite sensitive but still something that is very relevant and cannot be overlooked. If you have a diagnosis that comes with a timed life span then everyday that you (if the one diagnosed) or your loved one is alive, it feels like a blessing. You want to enjoy as many moments as you can, where possible. I in fact met a few people who were told they would only have a few years, and the have lived well beyond that.
If your diagnosis is rare and does not have enough information to give a time line then equally this could be unsettling, and fill you with more questions, and more moments
of anguish especially when you are alone and your mind has the time to toy with you. Either way there seems to be a continuous feeling of planning for the future that reoccurs in the back of your head, one that won't go away. How do I, how do we, make sure we are not leaving things to chance, what does that the future look like, how much money is needed, what needs to be in place, who needs to know what, are we, am I ready?
Physical and mental readiness
Weight is a factor that changes over time, and worth considering especially if additional assistance is needed to walk or use other other aids in and around the house, thinking of the toilet as an example. Maybe as with Luis, he needs some help going up and down the step and holding onto the rails, then turning him around and help him to sit. On some days this works well, on many days he does not do any of it so we have to physically lift him up onto the toilet.
We have felt how this is becoming increasing difficult and really look forward to the time he would not need to be lifted onto a step and supported onto the toilet. This is only one example indoors and I am sure many reading this could add much more.
Thinking about another example, I have seen at a SEN school not long ago a teenager quite a tall boy, who required 4 strong men to lift him off the ground and carry him onto the school bus, as decided to sit down with his legs crossed and not move. Who could prepare anyone for that, with everyday uncertainty a flexible approach is almost certainly required.
If I wanted to discuss the outdoors, Luis of course does not climb up into the car, so we have to lift him up into his seat and then strap him in. We have also invested in an additional seatbelt that goes over both his arms and up in between the legs and locks together, followed by using the standard seatbelt provided, all of the mentioned steps
which we must do for him.
Simple things like taking a walk, using a playground, getting in and out of clothes, and eating all require a degree of extra physical strength and mentally being prepared that this may be a lifelong scenario.
When we thought about being mentally prepared there can be an extensive list but it has been trimmed down to the following, remembering that some of these may apply to everyone and some not:
A clean house to prevent any accidents
Keeping the door to the kitchen closed when there is a lack of awareness
Realising you cannot have things like a nice vase on the table
Making sure the house is safe in general, like having a stair gate
No sharp edges around like tables edges or counter tops
It may be more reasonable to have the TV on the wall that on a stand
Sleeping arrangements, including having a camera in place or ensuring they are within close reach
Locking the front doors, in case like our Luis they get a sudden urge to try and open doors
We have hopefully provided some practical examples of how everyday scenarios can look when you sit and consider all the additional efforts required.
Isolation
There can be a feeling of isolation, with simple everyday things. When we feel for a break from cooking and want to enjoy a meal at the restaurant, it is not so simple. Luis for example, is excited outside whenever he sees a restaurant or somewhere he thinks sells fries as that is one of his favourite foods, his reaction is stretching his body in his pushchair or wheelchair and letting out a loud scream.
Even at the times when we are sat at a table waiting he can react like this, but he almost always starts screaming and crying almost willing for the food to come faster. He has even tried to grab fries from other tables as we are passing by. For any onlooker who has no or little interaction with disabilities of any kind Luis can seem like a misbehaved child, and we as a family can feel quite uneasy to see people staring at us. It can feel embarrassing for Eva and I understand that as she is only a child.
We also have a similar response when out in the grocery and Luis cannot stand to be there, he can let out a loud piercing scream and he is difficult to calm down and comfort in this state. We try to improvise by playing his favourite shows on our phone and distracting him or spinning him in the trolley, but even by that time the stares have already begun. Now we very rarely take him inside the shop or anything remotely like a mall.
I have spoken to other parents who have had similar scenarios with their children who have different disabilities, but they also feel to avoid the public, because the public does not know how to deal with and understand the scenarios.
Access physical and mental
This can be dependant on specific needs, however there have been improvement to disabled access in more built up areas, but there are not always the relevant accesses needed.
We found that in the airports dependant on the country access to a wheelchair or even meeting the needs of other disabilities vary greatly, some handle it quite well and others do not.
We were on holiday last year and the airport we arrived to had a disabled queue which we joined, there were a few people in front of us but no one at the desk. I stopped a few different immigration staff to ask if we could have assistance in the lane whilst Luis kept trying to lie down on the floor screaming, and we were being ignored. This is something we were prepared for, so if you are going on holiday I would advise doing some research in advance or trying to find if there are services available before you arrive via your holiday provider.
Thinking about outdoors, some nature walks have done a good job of keeping the place natural whilst providing a semi solid surface for pushchairs and wheelchairs. At the same time there are obvious places that are currently and to an extent understandable, that having access for someone with walking difficulties is not an easy task to overcome for example an underground tourist cave. It would be good to note that there will be many places that are not going to be suitable if you need to use an XL pushchair or wheelchair including some nature trails, some tourist attractions and even some train stations. So always try to plan and research ahead where possible.
Location
The over used phrase location, location, location... but its importance can never be truer. We always wanted a house somewhere slightly more rural not too close to the city but also not too far. Now our attention has shifted slightly with the intention to still live in a similar setting but now we must consider how far are we away from a hospital, the doctor, a pharmacy, a SEN school, in addition to main stream schools for Eva and Antonio. So lets break that down slightly using ourselves as an example, lets
take the hospital. This as obvious as it sounds has become more and more a must for us especially with Luis' seizures. He generally has Tonic seizures which last around 1-4 minutes, and every now and then especially lately they have changed, they have become more violent in nature and worry us as it is not his normal seizure. Our protocol is to wait until 5 minutes of a continuous seizure before administering Buccolam orally, and if that does not help then we would call 999, and in most instances we do not need to do either. Now lets consider if we were more rural and the circumstance turned out to be more critical... it does make you think about your location more than usual.
Thinking from another angle, if you are fortunate to have family support as in point one above then that is also another valuable factor for consideration. If reasonable, being close to that support would be of great help. Even though you would not want to burden family, having that support when offered makes all the sense that you position yourself closely.
Conclusion
This is a small list, as there are so many things to take note of but surely one worth considering. No doubt different disabilities and ages mean circumstances can vary greatly and sharing them would help someone else out there. It would be great to hear your thoughts on this and what else you would add, and maybe some personal experiences. It is easy to add comments, sign up as a member for free using the menu.
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