As my regular
readers know, several weeks ago my husband suffered a subarachnoid hemorrhage
(bleeding on the brain). In a matter of a handful of hours, we went from a
quiet morning together to a sleepless night in the Neuro ICU, scrambling to
make sure our daughter and catdog (that’s what we call our Yorkie. I mean,
really, is he a dog or a cat trapped in a fluffy dog body?) were taken care of,
beginning a week-long commute to and from the not-so-nearby hospital, as well
as several weeks of recuperating.
Or, as
someone put in a note to my husband, “cooperating.” (Not sure if that was a
misspelled typo, or written on purpose!)
I want to
share with you some things learned along the way, and hope that you will share
your tips, as well, believing that we learn best when we learn from each other.
As stressful as the past few weeks have been, preplanning for a personal
emergency really did help a difficult situation flow better.
Note that for
anyone here with Super Special kids, preplanning will be easy for you. After
all, many of us have “Black Belts in Autism”, and lists, plans and social story
writing are what we excel at.
GETTING
STARTED
1. Make a date to sit down with your spouse
and discuss what should be done, should a health crisis or other personal
emergency hit. (If you are a single parent, discuss this with the individual
who is your emergency contact).
2. Grab some paper and a pen, and jot down any
of the following information that resonates with you, keeping it together in
one (safe), easy-for-you-to-access place. (Feel free to print this out and use
this as an outline.)
FAMILY AT HOME
3. Have a backup plan for your child(ren),
in case of emergency. Even if your daughter is an older teen, capable of being
home alone, a family emergency is time to call on others for help, not to leave
her by herself, worried and, well…alone. If you have family out of town, be
sure to have a friend/neighbor or two you can call on to keep her company until
family arrives. And, of course, they really should know ahead of time about
Asperger’s and how it may manifest itself during such a time.
4. If you have any pets, ask a neighbor to
check in on them, or be prepared to board them, if necessary. Explain to your
child, if they will be staying apart from her pet(s), that it’s only for a
time, and that they are being taken care of.
SCHOOL
5. If your child attends public or private
school, do not forget to notify them of any absences. For kids considered
“special needs”, be sure to notify your key people at school, as it will help
them to know things at home have changed. This is one area where a preexisting,
positive relationship with the school is a huge benefit!
6. Depending on the severity of the
situation, it may be beneficial to request homework assignments.
THE WORKFRONT
7. Decide whom you would contact regarding
work, and have that name and number accessible. Have this person be your
contact for work, thereby minimizing calls, updates, etc., during the crisis.
8. Be sure to communicate with work how
long, at minimum you (and/or) your loved one will be out, and ask what they
need from you or the doctor.
9. Ask for FMLA paperwork, disability
information, or any other information and paperwork that will need to be
addressed during this time, especially if there is not enough sick leave
accrued to cover days missed.
THE HOMEFRONT
10. Have a handle on the bills – what they
are, when they are due, how much is in the bank – and make sure they are paid
in time. For some of us, this means understanding which bills are paid online
via the old fashioned way (check in the mail), and how to access the bank
account online. This is not the time to be late on the mortgage. Yes, it’s
exhausting, but finances need to be kept in control during this time.
11. Don’t forget to take the mail in. (Trust
me on that one! Oy.)
12. If you are not in a position to maintain
the yard, hire someone to do it for you until life stabilizes.
13. Set a reminder in your phone for garbage
day. (Yep, almost forgot that one, too!)
14. In general, don’t take for granted you
will remember daily or weekly tasks when life throws you a curveball covered in
spikes. Lack of sleep does “wonders” for remembering what day it is, let alone
what’s due when.
ASPERGERS AND
THE HOSPITAL
15. Asperger’s and Sensory Processing
Disorder go hand in hand, and hospitals are a terrific place to push those
limits! Each person is different, but keep SPD in mind when bringing your
Asperkid to visit her loved one.
a.
If
your child will be visiting in the ICU (which is permitted under some
circumstances), draw up a few social stories regarding what she may see, and
which behaviors are and are not acceptable.
i.
Visual
- For instance, dad will likely be hooked up to a monitor with all sorts of
cords and things “stuck” to him and in him. Don’t forget his new bed clothes,
either.
ii.
Tactile
- He will not be able to have a “smooshy” hug. The chairs may be hard and
awkward.
iii.
Sound
- We will have to whisper or not speak if we cannot use quiet voices. (In our
case, Kristina did very well visiting Dad in the ICU!) Sounds will be frequent
and odd, mostly due to monitors, but other patients may cry out, which can be
disorienting.
iv.
Taste
– Mom’s hospital food is…hers. She needs the nutrition. If your child is
persistent, offer to visit the cafeteria for similar options. (Yes, my child
requested hospital food. Admittedly, it really wasn’t that bad. Or maybe it was
the stress…?)
v.
Olfactory
– There’s the term “hospital smell” for a reason.
vi.
Let
the nurses nurse. Respect the staff, give them all the space they need and
leave when it’s time.
b.
For
regular floors, similar rules apply. Also, the patient is in charge of the TV
as well as the lighting. In our case, the lighting in the “regular room” (yep,
fluorescents) really threw Kristina for a loop, and she immediately developed a
“case” as to how her SPD should “have priority over” Dad – which brings us to…
c.
Have a pre-designated place for taking your
child for a chat in the event her behavior becomes a bit overwhelming. (Yep, be prepared for more of “those glares”
by others.)
d.
Consider
giving your child a little tour before settling in to visit the patient.
Kristina wanted to see the gift shop and cafeteria, and settled down once she
was able to get a feel for the place. And, honestly, after that she was able to
find her way around a very convoluted route, with no wrong turns! Amazing!
(Maybe trail guide is in her future, after all?)
e.
Keep
an eye on the patient and be prepared to act. As much as we love our family,
sometimes a very brief visit is best, but the patient may not indicate he needs
rest, in order not to offend. Take the initiative to give him a break.
f.
Honestly
assess your Asperkid in light of the situation. As much as the patient may want
to see the child, it may not be best. Weigh the costs before jumping in the car.
ASPERGERS
BACK AT HOME
16. Depending on the patient’s situation,
things may be different at home for a bit. Although it is often impossible to
predict every situation, talk to your child about what she might expect. For
instance:
a.
The
lighting in the home may be a bit dimmer, and the TV sound a bit lower than she
is used to for a while. If this is hard on her SPD, create a space for her
where she can watch TV, etc., with full lights blaring, if that’s what she
needs.
b.
The
patient may be staying in his room for an extended period of time, which means
no meals with the family at dinner time, and being extra quiet around that part
of the house. (And for smaller houses, the entire house, right?)
c.
It’s customary for folks to drop off a meal
during a health crisis. My Aspergirl was aware of this…to a point. I quickly
drew up a talk on how these are acts of kindness, not made-to-order meals.
Gotta love how the media portrays “how these things are supposed to be.” Darn
media.
d.
Just
because Dad looks normal doesn’t mean he can watch a DVD, play games, etc. In
our case, my husband’s injury is invisible, as it’s on the brain. In all
honesty, our daughter has been fantastic, but it is important to remember that,
just like ASD’s, if the injury isn’t easy to see, it’s easy to forget
difficulties are, indeed, present.
e.
Don’t
micromanage your child. She may step up to the occasion and shine! In fact, my
daughter was proactive on a few things, and it really made a positive
difference.
TAKING CARE
OF THE PRIMARY CAREGIVER (THAT’S YOU!)
17. As I wrote in “Asperger’s in PINK”, you
can’t adequately take care of others if you don’t take care of yourself. If you
don’t draw boundaries, they will be drawn for you. Trust me.
a.
When
the crisis hits, determine whom you need to contact – and keep that list as
short as possible.
b.
When
the dust starts to settle, consider appointing “Point People” (point of contact
people), whom you can give regular updates to, point others to, to answer
questions, etc. Personally, we had folks for work, family, friends and faith.
It just was not realistic to contact and respond to each and every person
individually, no matter how much we may have wanted to. In fact, after missing
the neurosurgeon by a mere 5 minutes, as I was on the phone updating someone, I
decided folks were just going to have to be frustrated with me. (And some
were.) The goal is for the loved one to heal, to be supported, and constantly
being on the phone or email isn’t doing any of that.
c.
Eat at least one well rounded, healthy meal
per day, no matter how low your appetite is. There were days I averaged only
one meal, which was typically in the hospital cafeteria, but I made sure it was
full of the right nutrients, and that really did help. Fast food is likely
going to make you feel even worse.
d.
Take
others up on their offers for help, be it in the form of a meal, babysitting, dog
sitting, or a ride to and from the hospital. If you are too tired to drive –
don’t. Get some rest then return, or ask a friend for a lift.
STICKY
SITUATIONS
18. Most likely, if your loved one is in the
ICU, they will need to be kept as calm and stress free as possible. As the
primary caregiver, you are on the frontlines when it comes to interacting with
others. If there are those in his life who tend to increase his stress, do not
allow those individuals to push you to come into contact with him. The goal is
for healing, not appeasing prickly people. (Let’s be honest, are prickly people
ever satisfied?) This is a very, very touchy subject, but keep your loved one
in the forefront of your mind, and make choices in light of healing, no matter
how difficult or ill-received those choices may be. Speak with the health care
professionals on his floor for advice in this area, and they will be honest
with you as to what is being “a controlling wife” vs. a wife who is looking out
for the best interests of her husband.
19. Find someone you can trust to be straight
with you, giving YOU reality checks along the way – and be open to them!
THINGS TO DO
NOW
20. Did you grab that pen and paper? Yes, a
real, live pen that might get ink all over your fingers! And paper – that stuff
that the printer loves to eat up? A computer file is great – so long as the
computer doesn’t crash, your file isn’t corrupted, or – this is in my case –
you forget where you saved it. Also, it really helps to have this information
portable. Trust me.
21. Talk with your significant other and
identify who to contact in case your child(ren) will need to stay with someone
else overnight. Then contact those people, and ask them if that would be ok.
The chance you will need to take them up on their kindness is slim, but, let’s
face it, if you have this part preplanned it will ease a burden you never knew
you had.
22. If you have pets, decide a plan of action
for them, as well. Is it help from a friend, family or neighbor? Or will they
need to be kenneled? Or will you need to drive to and from the hospital a few
times per day to take care of their needs?
23. Write down contact names and numbers for
work, school, and a few key people you’d want contacted during a crisis. With
Facebook being the main way for so many of us to keep in touch, you’ll likely
be surprised to find you have fewer emails or phone numbers on file that you
think – especially for friends of your partner! (This was very eye opening for
me!)
24. Make sure you both have all the member
numbers, usernames and passwords for sites such as banking, insurances, etc.,
as well as answers to security questions should the passwords be changed
without remembering to update the emergency list.
25. Get a Power of Attorney. If you have
moved, it may not be valid in your new state! There is nothing worse than being
asked in the ER if you are your husband’s Power of Attorney, only to be told
that as it was filed in another state, it may not be valid. Talk about feeling
helpless!
26. If applicable, make a list of recurring
payments, bills, etc., due dates, etc., the mortgage being a biggie.
27. Revisit the list annually.
If you’ve
read “Asperger’s in PINK”, many of the concepts should be familiar, and can be
summed up in a nutshell: plan ahead, keep in on paper, establish communication
guidelines, follow through, keep focused on the “star” (this case, the patient),
stick to the facts, take care of yourself.
Thankfully, my
husband is healing, and is expected to make a full recovery.
My wish is
that you will never, ever have to put this plan into place, but if that day
comes, it really will ease your stress if you are prepared.
Best,
Julie
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