Wednesday, January 21, 2009

There is always, ALWAYS Hope..

Mama Mara over at Mama on the Edge has a great blog post up this morning. It talks about the, albeit frequently painfully slow, progress that IS made by our kids. She's asking that her readers share their stories about how far their child(ren) on the spectrum have come over the years.

Here's a clip from her blog post
Do you have a story about how far your child on the autism spectrum has come over the years? Inspire hope in your readers by sharing it on your blog, and provide a link to your post in my comments.

I'd like to pick up on her idea (but full credit does go to Mama Mara). Do you have stories of hope and progress that you want to share? Feel free to do so in my comment section, or by linking to your own blog. Or, as this IS Mama Mara's idea, you can leave your stories on her blog. I would love to see a large web-wide chain of Hope Stories started..

I'll put up some stuff about Salamander a bit later today when I have more time (although there is already plenty on this blog that talks about the progress he has made.. LOL). In the mean time, you all have 'the floor'...

You all familiar with the Autism Treatment Evaluation Checklist, or ATEC for short? It's a pretty nifty (but granted, a subjective) scoring checklist to see if the treatments you are pursuing are having an effect on symptoms and presentations that are so frequently part of the "autism package." I am a scientist by training, I like to see data. I stumbled on this checklist early on in Salamander's diagnostic and then treatment process, and I have completed this checklist at various time points over the course of Salamander's journey.

I first completed the ATEC in, I think the Feb - April time frame of 2004. These scores reflected where Salamander was at prior to dietary changes, prior to any substantial educational supports and accommodations, prior to any remedial therapies. So these scores are a reflection of Salamander in his 'wild and feral stage'.

His initial score was 101 points (and the higher the score, the more impaired the subject) - a very HIGH score considering that Salamander had an Asperger's Diagnosis and therefore, by default, was "high functioning." But of course, as we all know the "high functioning" bit is very much tied to an ability to speak.. Salamander has always had speech, and as you can see, Salamander did score 'best' in the category for speech/language/communication. But we made up for that plenty in the other categories.

Total Score: 101 - At Age 6
I. Speech/Language/Communication: 7
II. Sociability: 24
III. Sensory/Cognitive Awareness: 20
IV. Health/Physical/Behavior: 50

I'll give you the actual breakdown. Reading through these still, to this day, hits me like a freight train. Salamander was in bad, bad shape.

**I. Speech/Language/Communication
["very true" is reflective of being LEAST impaired]
1. Knows own name: Very true
2. Responds to `No' or `Stop': Somewhat true
3. Can follow some commands: Somewhat true
4. Can use one word at a time: Very true
5. Can use 2 words at a time: Very true
6. Can use 3 words at a time: Very true
7. Knows 10 or more words: Very true
8. Can use sentences with 4 or more words: Very true
9. Explains what he/she wants: Somewhat true
10. Asks meaningful questions: Somewhat true
11. Speech tends to be meaningful/relevant: Somewhat true
12. Often uses several successive sentences: Very true
13. Carries on fairly good conversation: Somewhat true
14. Has normal ability to communicate for his/her age: Somewhat true

**II. Sociability
["very descriptive" is indicative of being MOST impaired]
1. Seems to be in a shell - you cannot reach him/her: Somewhat descriptive
2. Ignores other people: Very descriptive
3. Pays little or no attention when addressed: Very descriptive
4. Uncooperative and resistant: Very descriptive
5. No eye contact: Somewhat descriptive
6. Prefers to be left alone: Not descriptive
7. Shows no affection: Somewhat descriptive
8. Fails to greet parents: Somewhat descriptive
9. Avoids contact with others: Somewhat descriptive
10. Does not imitate: Somewhat descriptive
11. Dislikes being held/cuddled: Very descriptive
12. Does not share or show: Somewhat descriptive
13. Does not wave `bye bye': Not descriptive
14. Disagreeable/not compliant: Very descriptive
15. Temper tantrums: Very descriptive
16. Lacks friends/companions: Very descriptive
17. Rarely smiles: Somewhat descriptive
18. Insensitive to other's feelings: Somewhat descriptive
19. Indifferent to being liked: Somewhat descriptive
20. Indifferent if parent(s) leave: Not descriptive

**III. Sensory/Cognitive Awareness
[very descriptive is indicative of being LEAST impaired]
1. Responds to own name: Somewhat descriptive
2. Responds to praise: Not descriptive
3. Looks at people and animals: Somewhat descriptive
4. Looks at pictures (and T.V.): Very descriptive
5. Does drawing, coloring, art: Not descriptive
6. Plays with toys appropriately: Somewhat descriptive
7. Appropriate facial expression: Not descriptive
8. Understands stories on T.V.: Somewhat descriptive
9. Understands explanations: Somewhat descriptive
10. Aware of environment: Somewhat descriptive
11. Aware of danger: Somewhat descriptive
12. Shows imagination: Very descriptive
13. Initiates activities: Somewhat descriptive
14. Dresses self: Not descriptive
15. Curious, interested: Somewhat descriptive
16. Venturesome - explores: Somewhat descriptive
17. Tuned in - Not spacey: Somewhat descriptive
18. Looks where others are looking: Somewhat descriptive

**IV. Health/Physical/Behavior
["serious problem" is indicative of being MOST impaired]
1. Bed-wetting: Serious Problem
2. Wets pants/diapers: Moderate Problem
3. Soils pants/diapers: Moderate Problem
4. Diarrhea: Serious Problem
5. Constipation: Serious Problem
6. Sleep problems: Serious Problem
7. Eats too much/too little: Serious Problem
8. Extremely limited diet: Serious Problem
9. Hyperactive: Serious Problem
10. Lethargic: Not a Problem
11. Hits or injures self: Minor Problem
12. Hits or injures others: Serious Problem
13. Destructive: Serious Problem
14. Sound-sensitive: Moderate Problem
15. Anxious/fearful: Moderate Problem
16. Unhappy/crying: Moderate Problem
17. Seizures: Not a Problem
18. Obsessive speech: Moderate Problem
19. Rigid routines: Moderate Problem
20. Shouts or screams: Moderate Problem
21. Demands sameness: Moderate Problem
22. Often agitated: Moderate Problem
23. Not sensitive to pain: Not a Problem
24. Hooked or fixated on certain objects/topics: Moderate Problem
25. Repetitive movements: Not a Problem

It is now early 2009, so we are almost 5 years further in our journey. I just redid the ATEC once again. I'll let the numbers speak for themselves. Now these changes didn't just happen; an enormous amount of work and effort has been put in by a lot of people, most importantly by Salamander himself. Salamander has come far over the years, very very far.

Are you ready? Are you siting down?

Total Score: 8 At Age Almost 11;
down from a 101 score at Age 6
I. Speech/Language/Communication: 0; down from 7
II. Sociability: 0; down from 24
III. Sensory/Cognitive Awareness: 1; down from 20
IV. Health/Physical/Behavior: 7; down from 50

[I am not going to post the actual breakdowns, I DO have them..]

If this is not progress, I don't know what is... Now this didn't happen overnite.. it's been a long and difficult 5 years. But it DID happen...
And frequent visitors to my blog KNOW from my stories that these changes in the numbers are also reflected in Salamander's daily life, in his quality of life.

Progress is possible, never EVER give up hope. You just have to keep on looking for the right combination of 'things' that will help YOUR child the most..


At 11:08 AM, January 21, 2009 , Blogger Tammy said...

I shared my story on Mama Mara's site.

At 11:46 AM, January 21, 2009 , Blogger Petra said...

Tammy, what an amazing story. So happy that you found a way to help your son to communicate..

At 7:38 AM, January 24, 2009 , Anonymous silk said...

Now that's my favorite kind of "yes we can!" I think I definitely tend to focus too much on what we have left to do rather than how far we've come, but if I stopped and looked at it closely for awhile, I know it would be very gratifying


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