Friday, May 25, 2012

Happy 13th Birthday to my Nick xx

Nick's birthday has never been an easy time for me. He has no understanding of the significance of the day. The concept of birthday presents has no meaning to him and it has only been in the last couple of years that he will (not willingly) open one gaily wrapped parcel. Each birthday is a reminder of the severity of his disability. Each birthday is yet another sucker punch to let me know that his development is so far behind his chronological age.

I have spent the last couple of weeks going through hundreds of photos and its been quite a trip down memory lane.  Anyhow, I don't want to ramble on.....

Today I choose to celebrate my little boy who has now finally become a teenager... a spotty, hairy, smelly and a long string bean of a teenager. He is gentle, amusing, interactive, loving, innocent, sweet, noisy, passive, engaged and observant. He is my Nick and I am proud to be his mum.

































Friday, May 18, 2012

Food issues

My boy has such a restrictive diet and I have been mulling over ways on how to deal with this issue.


I happened to read this post from the Horizons Develpmental Resource Centre, called Picky Eater or Problem Feeder. They mentioned that "Kay Toomey and associates developed the Sensory-Oral-Sequential Approach to Feeding (SOS) which is the preferred treatment methodology for picky eaters and problem feeders alike". Aha, I thought..... this looks interesting, this looks like it could help my boy. My gut (pun intended!!) feel is that Nick's food issues all stem from his sensory profile. 


So, I googled Kay Toomey and the Sensory-Oral-Sequential Approach to Feeding (SOS).


I was absolutely gobsmacked (yes, pun intended!!) when I saw the google links for SOS! The third link was for Jacob's Journey: SOS feeding program!!!! Hah, Havest Moon......... this was definitely *THE* sign that I was on the right track. I have been following this amazing mother for YEARS!


Harvest Moon ~ Jacobs Journey
"The program is called the SOS (Sequential Oral Sensory) approach, and a concise description of it (and why it would be used) can be found here. Basically, it takes the understanding that these kids' feeding problems are based on sensory issues, and works on slowly desensitizing them to the overwhelming effect that food has on their senses. In a nutshell, you start by getting them to tolerate being near food, then progress to getting them to touch it, smell it, and eventually taste it. From looking at it to taste is a pretty long road, taken at micro-steps, but in the end should result in a child without an eating disorder, and without any trauma induced by the method"


Me thinks that this is the way I need to go........

~*~

Thursday, May 17, 2012

Excuse me.... this is not my baby!


March 2000

Dear Doctor 

Thank you once again for helping me deliver my little boy. It was very sweet of you to order me an epidural. I really was mighty chuffed, even though I subsequently heard via the grapevine, that you didn't like to get out of your bed unless absolutely necessary! Wow, that epidural did its trick, hey! It managed to slow down my contractions and prolong my labour until you had finished your eight hour sleep, have a leisurely breakfast and come to work all dressed up in your suit. Ahem, hope you don't mind me telling you this... but the white gumboots didn't look quite right!

Anyhow, I just need to bring up a little something that has been bothering me for a few months now. You see, Doctor...... I spent a lovely three days in hospital, bonding with my little boy. Did you know that we took to breastfeeding easily and that my baby actually gained weight before leaving the hospital!

The first couple of weeks at home are a bit of a blur! That constant treadmill of caring for a newborn, 24 hours a day, 7 days a week. Feeding, burping, changing nappies, sleeping... you get my drift?

Doctor, we then hit a little snag and the wheels fell off big time. My baby stopped feeding! I would put him to the breast and he would suckle for 30 seconds and then stop. I would wind him and try again. While I was going crazy mad over the feeding issue, I was also spending hours carrying around a screaming baby. Seriously, my life turned upside down. This pattern carried on for weeks until I finally introduced solids at 4 months. He must have got some nourishment from those quick 30 second feeds because he did put on weight. 25 GRAMS per week. Did you hear me Doctor? ONLY 25 GRAMS per week!! I should have started solids earlier, BUT I didn't! 

Life improved after solids...... until we started to notice that he wasn't reaching his milestones. Initially I explained this away by saying that his older sibling was a late developer. Again, this period of my life is a bit of a blur. Understandable, don't you think?

Doctor, he doesn't play, he is difficult to interact with, he doesn't explore, he doesn't crawl, he doesn't babble! He does not POINT! He cries, he howls and he cries some more. He won’t go to sleep and when he does sleep, he wakes up many times throughout the night. I swaddle him up tight and pull him in close to my body. I rock him, I bounce him, I cry over him, I push him in his buggy! My heart is breaking into pieces.

Doctor, something is going on with this kid. This is not the baby I ordered. Doctor, please help me...... I had a normal pregnancy, I didn't smoke or drink, I didn't take drugs..... Oops, I did take ONE tablet for serious nausea! Babies are meant to be highly social little creatures. This baby is hard work. This is not my baby, it can't be! 

It's OK, I won't be cross.... just please take this one back and give me my real baby. Please, PLEASE! I can't deal with this one. Admit it, Doctor. You gave me the wrong baby!


Friday, May 4, 2012