Parenting a spectrum of girls

Posts tagged ‘Asthma’

Another day

image

Teamwork

I felt the need, the call, whatever to write a blog post today, though I am not sure what of the thoughts in my head to single out.  It has been a somewhat challenging week for my little ones, and for me too I suppose.  Things overall are good, but this evening I feel melancholy.  Maybe I’m just tired and need a full night’s sleep.  This morning my alarm woke me in the middle of a vivid dream…don’t you hate that?  It makes you start the day feeling disoriented and like something is left unfinished.

K is going through a rough patch, adolescence or something more I am not sure.  She hasn’t had a bad attitude or anything like that, but I suppose she is feeling a bit melancholy herself.  And she has the ACT coming up very quickly, so I need to focus and make sure she takes all of the practice tests, as well as a full run through the weekend before. 

image

My pink haired girl

The same day K takes the ACT, A has her last soccer game of the season and M has dance class and the big end of the year recital, where I promised to be a room mom. I will be glad when that day is over!

M is having a hard time with school drop offs (some days) and refuses to go to children’s church.  She is ignoring her teacher at school and finding it impossible to sit still at rest time (thankfully no rest time next year in “regular” kindergarten!). She did crack me up today.  She and A were playing and I overheard M say “your mom is dead, remember?  That means you can have whatever you want to drink.”. Oh my…black and white thinking at its hilarious best.  She started to get upset today when I didn’t take the usual route home.  She ended up calming down but that hasn’t been an issue, well, since she started her meds last fall.  It worries me when I see these little regressions.

image

M with her finished bowl for Empty Bowls

A has been OK.  Asthma acting up a little, as well as seasonal allergies & her extra-sensitive mosquito bite allergy.  Here in Michigan the mosquitoes are AWFUL this year.  Yesterday she got some bites and she swells badly.  One on her foot swelled so bad we can hardly get any shoe on her foot and it is painful to touch.  Poor baby 😦

image

Baby bear putting flowers on my grandparents' grave

Yesterday we put flowers on my maternal grandparents’ graves.  This is something we do every year at the same time, to remember them and show our love and respect.  We also do it at this time because it is a tangible but indirect (i.e. less painful) way to remember E, our 2nd child.  We do it on the day that would been E’s birthday according to due date (also less painful than observing on the day of loss).  E would have been 7 this month.  We did this a day later this year because the day before I was exhausted and not up to going, but it was still nice (though of course M complained it was boring so we didn’t stay long).

image

K putting flowers on the graves

And…as if it weren’t eventful enough, the kittens all had conjunctivitis and needed a trip to the vet for some drops.  Fortunately they are 100% better already.  They are out of the crate and wandering around the house.  They are playful, adorable and have their own personalities.  I love them so much and we will miss them when they are old enough for their new homes.  But, 7 cats is really not an option for our family…though we are still trying to convince the hubby to keep one, taking our cat total to 4.  K named them (2 males & 2 females): Doctor, Melody, Amy & Rory.  😉

image

Doctor, the cutest & most easy going kitten ever!

image

Sweet Amy fell asleep on a pillow

We will get to rejuvenate this weekend with a soccer game, a cookout with friends and planting our garden.  Have a great Memorial Day weekend!

Odds & Ends

I have so much to write about.

It has been such a full, hectic week.

I have not written the last two days, and I must write today.  I will write more on these topics later, but for tonight, here is a snapshot of what has happened in our family this week.

Tuesday night (Wednesday morning) I went to bed at 1am…end of the semester, so I was up doing homework.  At 4am my Honey cat woke me up to let me know she was ready to have her kittens, and she wanted me with her!  She had 4 beautiful kittens.  We love them so much, but taking care of the mama and babies is proving to be more difficult than I expected.  She keeps trying to hide them inside our box springs!

image

Yesterday, M`s glasses came in.  Today she got to wear the to school for the first time and said she was able to see better and her eyes didn’t hurt as much.  They look amazing, too.  Hopefully this is an answer we have been praying for, to make school easier and more enjoyable for M.

image

Also yesterday, A had her first soccer practice.  This is her first time participating in a sport, and I am a little worried about her asthma.  Yesterday was great, though.  She loved it, her best friend is on her team, and she did a great job.  Maybe she will be a super star like her sister!  Then again, she sure enjoyed socializing and goofing off.  I do love that she is her own unique, wonderful person.

image

And tonight we got to celebrate K by attending the Carson Scholar’s banquet, as she is a 3 time scholar (she has been recognized every year possible.)  This year she even got her picture taken with Dr. Carson and he signed her copy of Gifted Hands.  He is such a wonderful, inspirational person.  This scholarship takes into account academics (scholars must have at least a 3.75 gpa with recommendations from teacher and principal), extra curricular activities and most of all, “great humanitarian work”.  I am so proud of my first born daughter.

image

So that is a highlight of the biggest events of our week.  It has been quite exciting at our house.  We are hoping for a calmer weekend!

Diagnosis what?!?

It seems, to people not dealing with special needs, that a diagnosis is simple.  It always seemed that way to me.  Most short or long term illnesses or diseases are easily diagnosed through relatively common tests (blood tests, radiography, cultures, etc).  Even some mental health issues are pretty easy to diagnose- depression, anxiety.  And then, of course, you might find out that some are not so easy to diagnose.

image

If you have a child on the spectrum, or are on the spectrum yourself, you know it takes a lot of time and a number of tests to get an ASD diagnosis, and even then it is not an exact science.  After 2 years of different doctors, psychologist, county school district testing, I finally got a referral to a Neuropsychologist to test for it.  2 days of testing.  Uncertain results, probably somewhere between Asperger’s and PDD-NOS.  Pediatrician marked Sensory Processing Disorder, Asperger’s, Muscular Coordination Disorder (Dyspraxia), Fine Motor Delay and Social Skills Delay.  Psychologist has Asperger’s or PDD-NOS, OCD and GAD.  OT (1 year ago) had Dyspraxia, Sensory Over-Responsive and severe Fine Motor Delay  School District (2 1/2 years ago, haven’t had her re-tested yet) said Sensory Processing Disorder and mild Speech Delay, mild Social Skills Delay.  Developmental Optometrist lists Asperger’s and Convergence Insufficiency.                                 
I thought her Psychiatrist had Asperger’s.  But he showed me somethingabout her medication on her paperwork, and I saw 2 diagnoses: Asperger’s and Mood Disorder-NOS.  I don’t know what to think.  What does that mean?  Does that mean he doesn’t think her behavior was a symptom of the Asperger’s?  (I say was because much of it has vastly improved on her mood medication).  Does that mean there is something else to add to the alphabet soup?  Does it matter if it is NOS (not otherwise specified), will we eventually have a name for whatever it is?

It shouldn’t matter to me, but it does.  Like maybe it shouldn’t have mattered to get an ASD (autism spectrum disorder) diagnosis, but it did.  I needed a name, because attached to the name is a description and a list of possible or probable symptoms and possible or probable ways to help her.  I needed that diagnosis before she started school because we were both petrified to have her start school and I needed to know what to do for her, what she might experience and how to most easily describe her and her difficulties to her teachers

And then, later in the week, I took my poor Amelia back to the doctor because of a UTI.  On her form it says MAJOR DIAGNOSIS:  Croup.  Obviously croup is not a major diagnosis.  But that is apparently how they are labeling her asthma, to see if she outgrows it, so it does not show up as a “preexisting condition”.  It just seemed odd, I would have expected “reactive airway disease” which is what they usually call it when she can’t breathe well every time she gets the sniffles or something.  And it made me think again how overly complicated the diagnosis game it.  We can’t call a spade a spade, there is too much involved…insurance, IEPs, 504s & other services available or withheld.  It is comforting to me that they show
major diagnosis and that any hospital or other medical institution would certainly recognize that as code for asthma in a young child and treat it accordingly.

I think we parents of special needs/chronically I’ll children deserve honorary Ph.D.s for all of our knowledge of terminology, tests, treatments, side effects, symptoms and for generally putting up with a plethora of doctors, therapists and specialists.

Tag Cloud

Life is all about how you handle Plan B.....

enjoy every moment, even the unexpected.

Gifted Atlanta

A resource for parents of bright and talented children

Writings of a Mrs Mommy

Writings of a Mrs. Mommy is the Mommy blog to my Writings of a Mrs's blog. This blog will be more about my busy life with 8 children and the many adventures on how the Mrs. and Mr. manage it all! Humor, stress, love, food and photos will be the main focus. Alex and Jenn plus kids make TEN!

Ginger Snaps

escapades in life, autism, and other shenanigans

Mama Gets Real

Mamahood is better when you are surrounded by Mamas.

This Side of Typical

Autism + Parenting + Peach Schnapps. Crazy Straw optional.

Laughing Through Tears

Two moms, four kids, many cocktails.

Musings of an Aspie

one woman's thoughts about life on the spectrum

the fairly good mother

... because you don't have to be perfect to be awesome ...

To Be Aware

It's all about disbelieving your thoughts

The True Power of Parenting

Emotional Intelligence for a Bright and Successful Future

The World of Special Olympics

The sun never sets on our Special Olympics Movement. See what's happening now...

It's my Asperger's

Living with Aspergers and ADHD

mamacravings

everything a mama could want

The Voice from the Backseat

One voice, and the journey along the way