Update on (looong!)

[Guest guest]

It's only been almost 6 weeks now since we first realised that our son had ASD. I'm feeling a bit discouraged, frightened and down so I thought I might write about the interventions that we've made and the incredible progress that has made in such a short time.

I started keeping a diary on him 5 weeks ago.

Here are the changes that we've made:

1 dramatic reduction in our vocabulary to noun/verb only and stopped speaking bi-lingually to him - we are only speaking English (6 weeks now)

2 AFP Peptizyde - very erratically will take this, just trying to get 1/2 capsule down him a day but not always succeeding!! (5 weeks now)

3 Bio-Kult probiotic - worked up to 1 capsule (4 weeks now)

4 Transitioned to 1/2 Kallo rice drink, 1/2 regular infant formula - drinks 8 to 9 bottles of infant formula a day so this reduces him to half the caesin he was previously ingesting. (3 weeks) also trying to get him to eat GF crackers, etc. but not totally eliminated gluten yet.

5 Reduced Gaviscon Infant from 2 sachets per bottle to 1 sachet (3 weeks) (this is reflux medication)

6 Physiotherapy - two sessions and increased vestibular and other sensory stimulation (3 weeks)

7 Zinc Drops (6 days)

8 Reduced Losec PPI (reflux med) to half previous dose (5 days)

Honestly, I can't believe the changes. The single most notable and consistent change was with the start of the probiotic. He immediately brightened up with it and when I increased from 1/2 to 1 he had more energy and less frustration. He is a very low energy boy with lots of whining and wanting to be held, etc. His stools have consistently darkened and bulked up (from bright yellow diahreah) and are now averaging two a day rather than 5 or 6 a day. The vinegar smell is gone from his stools (although today he had a bad diahhreah vinegary one for the first time in a few weeks).

Six weeks ago, (10 days after his 2nd birthday) his dad and I sat in the SLT's office trying to think of ANY words that he could understand to demonstrate his receptive communication skills. The only one that we could think that he half understood was *bye bye* otherwise he had NO receptive communication. He also had almost no expressive communicative skills (other than biting, hitting, hair pulling, tantruming!!). In the last 6 weeks he has progressed to taking our hands to objects, to demonstrating that he wants his coat off, his shoes off, he wants me to put him up down, that he wants me to button his top button, and then on to echoing what we are saying. He has said: up (uh) down (dah) cracker (kah kuh) Let's go (skooo!) who's here? (sss heeah?) squirrel (skaa) and a few others that I didn't write down. One day he spontaneously said Uh uh uh, dah dah dah when he went up and down some steps. One night when I put him in his cot he yelled *dah dah dah!* indicating that he wanted down! He is not, however, using this language to request, only to label or echo.

He is understanding enormous amounts of what we are telling him - on two occasions he has even understood WAIT!!! This is a child who would tantrum because he could not understand transitions or time. He now consistently understands: shoes, byebye, cracker, nappie, milk, car, daddy, jacket, train, and each day it is more and more. Recently he stopped mid-tantrum because he understood that I would read a book to him AFTER I wiped his hands!!

In late May I went to the high street to buy a toy for his 2nd birthday and ended up in the coffee shop toilet sobbing my eyes out because there were no toys that I could buy that would play with. (this is 10 days before dx.) He would open/shut doors and drawers, turn on washing machine/dryer/VCR/TV/Computer/dishwasher, switch light sockets on and off, run in circles, whine to be held constantly, stare out the window, or beg us to read books for hours at a time. Now he is pulling his train behind him, doing puzzles, yesterday he hugged his dolly and said, *aaahhhh*!!!!!!, he looks at books on his own, and he has made marks on paper with a crayon rather than moving the crayons from one pile to another.

We could not redirect him at all without a tantrum, this has pretty much stopped unless he is tired. On 3rd of June when I started a diary he tantrumed over 8 times - he is averaging 1 or 2 small ones a day now. Today at lunch his dad and I talked about the changes and we were so amazed. Only a month ago when he was taken to the park he would spend about 5 to 10 minutes on the playground then want to go off on his stimming along the pavement. He would stim incessantly. Today he played at the park with his dad, up and down the slide, swinging, on the teeter totter, walking without constantly *jigging*. Yesterday he chased a young boy around on a bike while they both laughed. On Friday we were at someone's house (hi!) and he played outside in the garden in a constructive way - riding the bulldozer, putting his train in the bucket, raising and lowering the bucket and shifting the gears! These are pretty incredible gains - just a month ago he could not co-ordinate his feet to push himself forward on a toddler bike.

Unfortunately his sleep is not any better. He has been up the past 7 nights, crying, wanting to have milk, screaming and sweating. I'm hoping that Magnesium will help his sleep but I don't feel that I need to start anything else for a few weeks now.

His compliance has increased dramatically, we believe this is because his comprehension has increased so much. He still is very rigid about certain things and is stimming some but can be redirected in most cases. His PICA has also increased as has his repertoire of foods that he will eat (and swallow! lol). He has even taken several drinks of water without making himself vomit!!!!

Sorry to carry on so much. I really needed to remind myself that we've come a substantial way in a short time. I'm feeling quite overwhelmed with the financial implications of starting a VB program and also feeling really low that he won't eat enough food to sustain his weight without vast quantities of milk.

Thanks for reading, hope someone takes some encouragement from this. I know I always find reading the gains very encouraging. Thanks so much for all of your help, the people here have been a lifesaver and, most importantly, have made a real difference in the quality of our son's life.

Take care,

DarlaLondonDH BobanDS 2 years and 1 month