To the Best of Our Abilities: post ideas

This isn't a normal blog...

Life gets kinda chaotic around here... so don't expect regular posts. This blog is a gradual collection of hints, tips, and anecdotes about how we live life with one son who has autism, one daughter who is "typical", one son who is profoundly disabled and medically fragile, and one daughter with borderline delays and unclear medical complications. When life gets crazy, I won't post...but when things slow down (or I'm sitting in the hospital for a few days twiddling my thumbs) I'll add more posts about things we do to live a fun and joyful life...to the best of our abilities.

Sunday, July 1, 2012

post ideas

Okay, I honestly don't know if anyone will actually read this blog, but just in case someone does, here is a list of my ideas for future posts.
Some have spoiler notes, and others won't make sense to anyone but me, but if you see a topic that you would like me to post about, leave a comment. I'll try to get to it as soon as I can!

childproofing
meds storage
skit (you're in trouble)
draw what you can't say
visual schedule (ID house)
portable visual schedule
portable token system (reverence chart)
moving (IEP early)
is "age appropriate" wise?
communicating with doctors' offices
my favorite quote
going to church
grocery shopping
babysitter for MY kids (oi, vey!)
"Dating" with a tag-along
Storytime at the Boise Library
Killing time away from home
Ready Set Go Developmental Therapy Preschool
Sensory Intervention (plug the book)
Cranial-Sacral Therapy
3 kids in diapers
"Do you want to meet Nate?"
Here's Our Card (sensory, etc.)
Automatic Toilets
Long Hospital Stays
Tips for Friends and Family
g-tubes and clothing
oxygen tubing and getting dressed
oximeter monitor and clothing
the elephant in the room (yoda)
public events (don't spend lots of money- you'll just get mad when you have to leave early)
handicapped parking spaces
rare chromosome resources
IAN
proloquo2go/tap to talk
sleep sacks
Nate's bed
My own health (mastectomy prep and recover)
Faith
wrap your baby
strollers we've used
our wheelchair
Golden Ticket
Perks (no meter fee, state/national park fee, Disneyland)
Bathtime
Too big for a diaper changing table
entertaining siblings at the doctor's office

1 comment:

SpringMarch 19, 2013 at 9:22 PM
I read every single one of these and thought "ohh, that would be a good one . . . oh that would be a great one too!" Communicating with doctor's offices. I have heard multiple friends complain about communication with drs especially when they have to use multiple ones. I thought of how well you kept Nate's binder and asked every doctor's office for notes to be sent to you. I would love to hear your suggestions. Also tips for family and friends (hopefully I fall under both :) and . . . well actually every one, they sound great. When you have time of course. :)
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There is no book about us...

Our family is a bit different...we don't really find much use for the normal "child development" books. Not that they are worthless...we just have to find our own pace. Our own path. Our own way of getting things done. With several different "abilities" in our home, we have to engage in a fair bit of creative thinking!

Hyrum was born in 2003. He was "typical" until about two, then gradually reverted to autism. He is mentally in the normal range, but communication and social skills make life challenging for him. He is almost constantly happy, however! His imagination is AMAZING, and he quickly becomes a favorite with anyone who works with him. He copes fairly well with change, but has several sensory challenges, and he would much rather not have to take responsibility for his own choices! Kinda like any kid his age...

Hannah was born in 2005. She's the middle child and the only "typical" child in our family...double whammy! She does struggle with anxiety and demands her share of attention, of course. She is also very helpful and thoughtful. She loves anything fluffy- particularly kitties and blankies. She is the world's best "therapy" for Hyrum, simply by playing with him. She and he are best buddies, so of course they bicker. I wasn't sure I could raise a girl, but she got me hooked. And she was THRILLED when Naomi came along!!

Nate was born in 2007. He has a very very very very very rare chromosome abnormality, so rare that we have heard of only two others with similar (but not identical) chromosome arrangements. I call it 9p-8q+, but there is no real name for it. He has a lot of other "labels": profound global delays, medically fragile, cerebral palsy, g-tube dependent, wheelchair dependent, nonverbal, NPO, oxygen dependent, scoliosis, low muscle tone, contractures, hypogammaglobulinemia (say that five times fast), CVI, Lennox-Gastaut seizures (dozens a day), renal abnormalities, more GI surgeries than you can shake a stick at, etc... I really can't think of them all. He has had up to 15 doctors at a time; we currently see about 8 or 9 of them on a regular basis. He's had a fair number of therapies, too. Developmentally Nate is at about the level of a 4 to 6 month old baby...in an 9 year old's body. He is the most placid, patient, cuddly, cute little guy I know...but I'm a little biased. I often refer to him as my "easy one" because he stays put in one spot if I need him to! He has blessed our lives, and we are so glad for all he teaches us.

Naomi was born in 2013. Many people think we were crazy to have a baby with Nate still needing as much care as an infant, but, well...I had three kids in diapers once before so I figure having a baby along with Nate wouldn't be much different. So far, it has been rough and I desperately miss sleep, but we are so grateful for our cute little girl! Nothing elaborate happens around here, but everyone's basic needs are being met. She was an easy baby, a nap-refusing toddler, and is now a fairly easy-going preschooler. She does have periventricular heterotopia, which won't show any symptoms until she is a pre-teen, if ever. She currently has mild delays due to a prenatal brain bleed and mild hydrocephaly, resulting in craniomegaly, early feeding problems, speech and motor planning delays, and hypotonia which has mostly resolved by age three. But all of her issues are so subtle that most people have no idea she has problems, and I highly expect her brain to "re-wire" and compensate by the time she reaches grade school.

So, yeah, we don't fit into the typical audience of most "how to raise your child" books. But I do know that ALL families are unique, and that everyone faces a challenge that forces them to approach a task (or life itself) from a new angle. I hope that by sharing how we "get things done", we may help someone else who is wondering how to handle life with a special needs child...or two...or more...