Medical: Last night I was up sorting through Lorraine’s files taking a look at all the medical information on Roxanne: reports, assessments, doctors, prescriptions, medical research, support workers… a lot of information, all of it important. I was so keenly aware of how much information and knowledge Lorraine needs to have have in her head and at hand at any given time. So, when you are creating your medical files be very specific with your categories. Particularly when there are other children and family members. Try not to make any “catch-all” categories like – “Info”. It may take more time to set up but it’s worth it.
These are the categories I set up for Roxanne for example: Assessments, Doctors, Medication, Receipts and Medical Research. Your child might have different needs. For example there may be a number of specialists involved – some behavioral and others clinical. So your Doctors categories may look something like this: Doctors – Speech Therapist: Reports, Doctors – Speech Therapist: Excercises. Be specific.
I was talking with a friend of mine, Lorraine, a single parent who has a 22 year old daughter who is special needs and she mentioned how she wanted to find more support for her and her daughter. Children are truly the greatest blessing in anyone’s life. That doesn’t mean that rearing them is easy . There never seems to be enough time or energy to stay on top of the “managing” – logistically – of their lives.
But when you have a child that is special needs, a disability, disease, those demands; time, energy, resources and finances seem to spiral out of control. Your time is focused on immediate needs. I asked Lorraine if she wouldn’t mind showing me all her paper files. She looked so uncomfortable, so sad. “There are no “files” Isolde” she said, “there are just boxes and boxes of papers. I make sure I keep everything but I don’t have the time to sort them”.
After taking a look at all of Lorraine’s files and discussing all the demands of her day to day life I resolved to take up the challenge and use this blog to chronicle the many areas and needs of organizing the life of a child with special needs.
Some of Lorraine's boxes of papers
Categories for filing
Assessments – Medical and Educational: This needs to be kept up to date. Quite often when you are looking to qualify for care, transport, medical accessories, extra curricular activities and government programs you will need to reference these.
Education – Report cards, Schools, Contact information for students and school, Calenders, Correspondence: Roxanne also has a seizure disorder which means that some days Lorraine will be talking to the school a lot or keeping her home. It can be very difficult to keep up to date with every teacher and classmates. There are always forms to be filled out too and keeping on top of these can take up a lot of time particularly when there is medication involved which there is with Roxanne. Keep all the report cards but make sure you keep the other categories current or it can get very confusing when you need a name, number or form immediately.
Extra Curricular Activities: Choir, swimming, art, Summer Camp, Potential, etc: Keep this up to date so that you know when to renew programs. Roxanne is sooooo creative – her art is fantastic. She also has perfect pitch as a singer and can sing every song from the Wizzard of Oz! There are so many programs out there. what usually happens is that you see a flier on a new one that looks promising but forget where you put it when you got home. That’s why it’s important to have a “Potential” file. Put all those fliers, notes etc in there.
As a parent, you may have experienced the panicky feeling before; suddenly you start forgetting simple things like names, tasks, phone numbers, addresses, or find yourself thinking “why did I come into this room?” And occasionally, a panicked feeling crosses your mind that one day birthdays and child-rearing memories will be gone. In my discussions with clients who are parents of young children, the inevitable “I think I have developed a memory problem” often slips out. I’ve heard “I think I might have Alzheimer’s” uttered under the breath of new moms too often.
It’s taboo isn’t it, to admit that you think you’re losing your memory… to admit your struggles as a new parent?
Along with the stresses and pressures of being a new parent, there are also consumer driven messages to be a “good parent”; maintaining nutritious feedings, ideal childcare, picture perfect school schedules, extra-curricular activities, homework, friends, sleep-overs, shopping (the list goes on!) On top of the pressures to fit into the new parent role, the busy parents I meet with also balance the complexities of having and running a home, career, adult relationships and the struggle to find that work/life balance.
It doesn’t seem to me that the majority of the parents I work with have medical “Mumnesia“, but rather, are just new parents lacking the organizational tools that are essential for coping with all the new changes.
So what can you do to deal with this scary situation (on top of everything else you have to do?) First, take a moment to laugh at life’s simplest moments. Laughing helps me with stress reduction! This short video will make you smile.
Next, to cope with this worrying memory anxiety, use my tips for memory recall and task organization – these tips will not only help you to adjust to new parenting, but can help in any challenging new life situation.
1) Begin with a notebook - yes, writing it down really does help! Get one sturdy hard-cover notebook, and divide it into three sections; To-Dos, Communications (Call-backs), and Purchases; (books you want to read, courses you want to take, and the all important shopping list).
2) Log every call. Be sure to have the notebook with you each time you’re on the phone. Take notes – the phone number, what you discussed, the date of the conversation, and who you spoke to.
3) Cross it off! Note every action item, call or letter in your To-Do section. Review your list often, and cross off items as you go (even the littlest of tasks) – it will help!
4) Take it with you! The last section of your notebook should contain the names of books, classes or special interest purchases that you might want to make in the near future (kind of like a wish-list shopping list!). Having your action items, call list and shopping items in one book ensures that you’re not digging through scraps of paper, searching for that little post-it note, or forgetting the shopping list on the fridge. This hard-cover notebook contains everything you need to keep you on track.
5) A place for everything … and everything in its place. Yep. That’s right – your mother said it to you growing up but, in this case she did know best! File away important documents (couldn’t help it I had to mention filing!), and reduce those ‘Now where did I put that?’ moments by establishing designated places for keys, agendas, umbrellas….
6) Hydrate. One of the main symptoms of memory loss is dehydration. A lot of moms forget to drink throughout the day, so up you intake of water, herbal teas or fruit juices – now that was easy eh?
. There never seems to be enough time or energy to stay on top of the “managing” – logistically – of their lives.
