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Wouldn’t It Be Good

How Do You Measure Progress in Autism?

White levis

By Kim Stagliano

How do you measure progress in your child with autism? That's me last night wearing my favorite white Levi's. The ones I was glad I was not wearing when I wriggled out of my undies and gave them to Mia at the urgent care center a couple of years ago (page 106 in my book All I Can Handle I'm No Mother Teresa.) 

When I snapped the photo, we had just returned from an evening out for dinner, with Mia, Gianna and Bella.  Mia sat to my right, Bella to my left in the booth.  Do you see any stains on my pants? No, you do not. The girls "ate neatly," to borrow a phrase from one of my favorite children's stories Leo The Late Bloomer.  No smears, no spills, no catching a drink midair. We had a lovely dinner (it was Mark's birthday.)

Clean white Levi's equals tremendous progress for my girls. I'm proud of them. And happy I didn't have to run home and grab the OxyClean.

How do you measure progress in your household?


All I Can Handle Small Kim Stagliano is Managing Editor of Age of Autism. Her book from Skyhorse Publishing, All I Can Handle I'm No Mother Teresa; A Life Raising Three Daughters with Autism is available now. Visit her website at Kim Stagliano

 

 

Comments

Nick

I measure it in a some aspect when children with Autism no longer have ears like the one in the picture in the piece linked below. My wife very often had ears like that until she was well into the first part of recovery.

Autism Risk 'High' For Kids With Older Sibling With The Disorder

http://www.npr.org/blogs/health/2011/08/15/139587398/younger-siblings-of-autistic-kids-their-risk-greater-than-thought#more

Jeannette Bishop

When my daughter recently began making her own "cheer up" lyrics to her favorite tunes to calm herself and when I learned it was at least as important to herself to "not have a tantrum" as it was to anyone else involved.

Garbo

The first time he dressed himself as a surprise for us; age 4, 2 weeks after starting SuperNuThera.

The first time he made a poop without it being a frightening constipated tear-fest for all of us; a few months after GF/CF, probiotics, supplements etc. kicked in.

When the teachers and classroom aide agreed he no longer needed 1:1 help; 6 months after starting LDN.

When he could work in groups or play games without blowing a gasket: Still hasn't fully happened but I have hope. We did little league last year and made it through 15 minutes of Scrabble the other day. Progress?

Barry

One of the hardest parts of our sons regressive autism, was his apparent new indifference towards his older, neuro-typical brother.

It was painful to watch, because although our older son has a very patient and nurturing demeanor, we knew it caused him pain that he was just too young to understand.

But in recent months, we've tried some new treatments that have brought about some pleasant changes. And one of the biggest new changes, is that our autistic son now wants LOTS to do with his older brother. In fact this past week, they built a fort together in my autistic son’s bedroom.

They go there at bed time every night now, and although my older son will eventually make his way back to his own bed, he always stays until he knows his little brother is asleep.

I realize the biggest reason he stays is that his little brother will object if he tries to leave. But I also realize that his little brother really doesn’t need to object very hard.

Biomedical interventions have been a see saw battle at the best of times, but this kind progress was truly worth waiting for.

Robin Kolesar

I measure progress when my daughter will give me her hoodie to wash and not have a meltdown.

Jessica Aukema

Noah sang "happy birthday" to me this year. All by himself, nobody prompted him. I simply told him it was my birthday, and he sang to me. It was the best birthday gift a momma could ask for.

lisa thomassen

Progress was watching my son ride a boogie board at the beach for 2 hours straight
And my daughter swimming like a fish in the ocean and actually listening to me when I toldwould her to swim closer to me, and last week she actually got a little pink skin almost a touch of sunburn. As a toddler she never tanned or burned which was odd considering she is blond with blue eyes. She started tanning around ag 5 or 6burned and is now 8. I believe this is progress in her health.

Maurine Meleck

At first I thought the photo was of 2 bodies under sheets-not kidding either.
This is for Alison-not want to ride the #72 bus. OMG. His he done with bus rides?
Progress? If I am still standing at the end of the day. Not sure if it's Joshua's progress or mine.(maybe both)
Maurine

Karla Elliott

When, last week, for the first time ever, my son said "Mommy, I give you a kiss". And he did. On my left cheek, all appropriately pucker lipped And with a smacking sound. I never realized how much we took that for granted with his older brothers.

Angie

I played Candyland with both of my sons this week. Now that is major progress for both of them!! I'll be working on those white pants for a while though...lol

Carolyn M

Sorry for the typo. The last line should have read, "When she has more spontaneous, appropriate speech."

Carolyn M

When my daughter goes to sleep within about 1/2 hour, without signs of reflux. When she sleeps through the night.

When she has more spontaeous, appropriate speech.

Terri Lewis

When he learned to use the potty (so what if he was 4 1/2?);
When he stopped having accidents in bed overnight (the last one was at age 8);
When he says, "I love you," and not, "I'm afraid I'll hurt you with that knife."
When he can sleep by himself all night (most nights);
When his two sisters aren't afraid of what he might do;
When he learned to ride his bike--just the regular way!
When he found a school that finally, finally knows how to help him and a teacher who really likes him.

Cat Jameson

Measured progress: watching Ronan getting his nails trimmed by Daddy without wiggles, squirms, pulling away or play fighting. Then, watching Ronan get his teeth brushed completely with the same ease. Hubby promised to teach me how he does it so I can be successful, too :)

kathy blanco

ok, when I see progress, being blunt here, I see a child who's stomach doesn't look like a biafra child, muscular developing, abilty to handle situations without freaking out, eating well, sleeping well, poopy is not poopyp all over their underwear or toilet or bed, not peeing themselves, no advantageious movements (one has PANDAS), a smile, a nod of hey, I am in here you know, actual laughter, asking for friends, asking to go somewhere, not looking spaced out or stoned, less seizures, and finally, the ability to actually think I can have two minutes for myself, or even better, an entire weekend away with my husband without thinking about what is going on at home, I hope they are alright, etc etc. I can see that at times, but it's like a rollercoaster ride. Just when you think you have conquered the gut bugs, then something else rears it's head again. Autism is a multisystemic disorder, and as soon as people get that, the better off we will all be..but hey, even if I had white pants, I would spill something on myself...so there...I go...

Kellie Dungan

When my son wanted to know why I always drive the same direction to the Dr.'s and park in the same spot and asked if we can park in a different spot next time.

Taximom

When my son managed to sleep through the night without Mommy or Daddy for the first time in his life at age 8.

We were taking care of our neighbor's marvelous Border Collie, when the neighbors went out of town, and we showed the dog our son's bed, and told him (the dog) that he would be sleeping there with our son that night.

(This dog was not allowed on furniture in his own home, but we had his owners' permission to let him sleep on our son's bed.)

I swear to G-d, the dog understood every word I said, AND the unspoken reasons why. He slept all night in my son's arms, and my son didn't wake once.

I highly recommend Border Collies. We ended up getting a Border Collie mix from the shelter, and he's been fantastic with the kids. He barks at them when it's bedtime, and barks until they go to bed.

Anne McElroy Dachel

I remember when my son first answered the door by himself when there was a stranger there. UNBELIEVABLE! He was 12.

Donna L.

John stopped watching the first twelve minutes of Groundhog Day over and over again!

Stagmom

Mia dropped her vampire and pumpkin friends from Halloween 2009!!! We're no longer the only Catholics who tote the undead to Church! This happened a week ago. She just put them down and didn't look back. YAY!!!

Kim Stagliano

Alison MacNeil

Nick hasn't wanted to ride the #72 bus in 3 weeks!

HFAmomto3HFAgirls

Poop is no longer the preferred art supply at my house! Yay! Guess I'll have to change the family motto now, 'Poop is not an art supply!'.

Nick

One more thing about the Marshall Protocol. It could be that one of the ways the Olmesartan helps in Auism in those with immune problems is that it stabilizes the VDR function allowing and anchored feedback for the possiblity of homeostastis of immune fuction in other related immune responses and in general to occur. This would be in addition to it's ability to facilitate pathogen destruction.

Nick

Kelly,

Your post sounds a somewhat famiiar in aspects as far as your kids problems. I also have seen the very positive outcome of the Marshall protocol and understand your comments on 1-25d and D aspects and bacteria. Many Autism parents give their children Vitamin D and tout it's benefit and many Biomed Docs promote this approach, but as you know, Marshall says this leads to a temporary reduction in inflamation that actually allows the problems to deepen and in the long run do more harm.

I am convinced that for a large number of people he is correct, but it may be that D supplemenation is only a negative for those with Autism who have certain causes of their inflamation. There may be a number for whom Vitamin D supplements could either be helpful or do nothing. I have read the reports of many who have improved by Marshall's approach and I can say it is working in one case from observing someone's improvement clearly tied to it.

I think it is likely that anyone with long term inflamatory problems would be helped a great deal by the Protocol. It is possible he is totally correct about 1-25 D effects regarding disease in all chronic inflamatory cases, but the proof of it's negative affects may not be seen or felt strongly enough until one has had problems for a long time and since they may have felt better for months or years while taking D they would probably think D supplemntation had nothing to do with health problems incurred possibly much after they began taking it. In fact, it is clear you don't have to ever, and many would not, have taken Vitamin D supplements for problems with it in the body to exist and the condition he describes to be occurring.

Some seem to split the difference, so to speak, and advocate D3 supplementation only suggesting that it would be the theraputic type of D.

Kelly Fincher

When my son (we have twin sons) tells me the man with the axe in his head is gone.
When my other son doesn’t stare at the walls for hours.
When they have energy to talk.
When they have energy to laugh, huge bonus to hear it once a week.
When one son got his driver’s license finally at nearly 19 yo and took his brother to a movie all by themselves!
When one son completed high school (homeschooled) in 9 months, studied for the SAT and scored a 1510.
When the other is finally able to cope and started studying thanks to Yasko’s low lithium connection to bacteria.
When one son got a cell phone this summer and started texting all day long and has a girlfriend!
When the other son is observing this new behavior and wants it desperately but his debilitating anxiety and OCD keep him homebound.
When we go 24 hours without one of them telling me about a new physical ailment: headache, pain in the intestines, muscle pain, rib pain, back pain, debilitating fatigue,
breathing problems, sinus drainage, constipation, diarrhea, light sensitivity, eczema.
I don’t expect they will ever have 100% robust health, but they are making progress despite the poisonings of our toxic world which causes chronic inflammation.
Huge, huge progress thanks to a doctor who understands chronic inflammation and its effects on the immune system and how there is a monumental, massive
misunderstanding of low 25D labs: it’s the result of disease not the cause; the cell’s feedback system lowers 25D in order to keep 1,25D in check,
because it is 1,25D that goes sky high with chronic inflammation and disrupts vital nuclear cell receptors, interfering with gene transcription of
your endogenous antimicrobials. Once pathogens accumulate, they keep you in chronic inflammation. Disaster. 1,25D is hard to test: it is fragile and must
be frozen because agitation will destroy it in transit. It is not a common test and is expensive but is an excellent confirmation marker of what we sickos have in
common: chronic inflammation.



Not an MD

I measure progress by seeing my children laugh at something that is truly funny. It took a long time for them to develop a sense of humor.

I measure progress by seeing how much more physically coordinated they are at every annual Field Day at school.

I measure progress by seeing that they are so close to being able to do freestyle swimming due to their amazing and patient swim instructor who has miraculously gotten them to put their heads completely under water and do back floats in spite of their sensory issues.

Finally, I measure progress by listening to their intelligent and adorable questions about the world. I am so grateful to God they were able to learn to speak.

Oh, and Kim, those white pants look amazing!

Tracy McDermott

The lingering smell is the only sign I know my son has pooped!

(this translates into no fudgey underpants, no smears on toilet seat or nuggets on floor, no poopy toilet paper in garbage can, and no last minute dashes down the hall...)

Handling it all on his own these days :))

(oh and it smells like poop, not dead fish ~ that's progress!)

Teresa Conrick

Meg is still sleeping - not up during the night with diarrhea, pain, agitation, OCD, tics. She is able to sleep!

Heather

That is wonderful!!! Congrats!!

Donna L.

For me, progress means getting through an entire week without having my arms covered with bruises.

TannersDad Tim Welsh

Tanner had his first copycat yawn since regression this week.

Angus Files

A good day is when I manage to have the time to post on AOA coherently ...

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