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.
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.
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.
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.
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.
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.