End of year lists

At the end of 2010 here is what Owen is signing

cake, dinosaur, cook, bike, chicken, egg, mouse, cat, hat, queen, dog, milk, drink, eat, toast (gesture), giraffe, ice cream, flower, play, poo, train, music, shark, fish, bee, crocodile (g), frog, sheep, pig, monkey, horse (g), tree, swing, toilet, paper, bath, ball, happy, sad, phone, glasses, star, boat, fish, finished, friends, go, bird, duck, pasta, hot, book, sleep/bed, jump, elephant, run, boy, rock, orange, more, bubble, please, bear, huge, little, rain, rabbit, rainbow, butterfly, wash, gorilla, crash, where, baby (74)

and he sayes - Santa(this week), apple (this week), Randall, Cyrus, car, tiger, cow (moo), ball, hello/bye, light, up, tah (as in give), teddy, Owen, Dad - (15) This week has seen a leap in his attempts at sounds, we are hearing lots of awwwh ba ba ba and la la and hearing two new words in a week is an absolute joy !

He is having his second round of speech therapy this week (his first since he was 13 months old), which is why I have made these lists because I like to go in knowing just what he is doing.

Also this week I put a bowl of pasta onto his highchair table and he put his hand in the bowl and went to take a piece out but dropped it immediately and signed HOT ! and then started to blow, I was so impressed with his understanding, use of sign and what to do next, he has definitely had a little development spurt this week.

I am wary of counting words and signs because I know it can be very misleading for instance Cyrus only had about 30 words/signs at 2 years old and he took an amazing leap this year and now has hundreds of words which he can put into 4-6 word sentences, so there was definitely alot happening "in there" but he just couldn't express himself and his visual learning wasn't very good - perhaps it was his long-sightedness that made it hard or perhaps his gross motor delay but he was never a huge signer, he knows what they are but he didn't use them like Owen does.

And just because Owen knows the sign doesn't mean he understands for instance if he sees a picture of a Gorilla he signs horse and if I say no its not a horse he might sign sheep or some other animal (he is having a guess) and then I have to say no its a gorilla and then he signs gorilla- so he knows the verbal word gorilla and signs appropriately and he can read the word gorilla and sign appropriately but he still has remembering what the actual picture of the gorilla looks like. I guess this is where I see the learning difficulty, the need for for constant repetition I know he will get it one day. Its like the word friend he knows the sign for it but I am pretty sure he has no idea what a friend is but over time I know he will develop an understanding of it just like he has the word hot.

I know that Owen is doing really well with his signs and I enjoy teaching him, I am so grateful for the Internet it has been such an amazing resource, it makes me cringe to think where he would be at if we just relied on the service provided by Disability Services in this country actually its a disgrace but that is the subject for another post at another time.

So looking forward to this new year roll on 2011

inspiration

When Owen was first born I did alot of internet searches on Down Syndrome, most of it was rather depressing and scarey - that was until I found blog land -but before I found the blogs I found this, the most seriously inspirational advertisment ever.



I called Col over to the computer to watch it, we smiled, we laughed, we cried, and felt for the first time that everything would be okay. Emotional. Powerful. Inspirational.

perspective

Owens sudden weaning has compounded so many feelings, I just feel such a total lack of control over my life right now. I wanted to feed him until he was 2.5 -3 years old, he is my LAST baby, he is that baby that MOST needs my milk but he is the baby that has decided he is OVER it - long before I was ready.

Yesterday was the first day I haven't expressed milk, it made me feel so guilty, and angry, I know I could keep pumping to give him the nutritional benefits of milk but I would have to increase the number of times I express to 3 or 4 times a day I have been pumping just twice a day and I have watched my supply dwindle over the past few weeks. It all seems like such a hassle to me at this time. And for me nursing has been about so much more than nutrition.

My breastfeeding relationship with Owen has held me together all these months. When he was first born it wasn't easy and he had a nasogastric tube inserted he needed some practice and he was only 34 weeks old so he tired easily, but after a few days he really had the hang of it and I had lots of milk because I was still feeding Cyrus as well. Nursing bonded Owen and I together after his birth and the shock of the DS diagnosis, because even inside the storm of grief I was able find a peaceful, deep love and acceptance when I held him and nursed him - he was MY son. My milk helped him to recover from his bad Jaundice, it was the only thing I wanted to do after his heart surgery - to nurse him to hold him safely in my arms again and give him the warm, nourishing milk and emotional comfort he needed, and when he got rotovirus and RSV at the same time and pediatrician told me he didn' t need fluid replacement because he was breastfed that was the best feeling, and when he put on kilograms of weight after his heart surgery -pure gorgeous baby fat I felt so proud of our breastfeeding relationship, and through all the other sicknesses he has had, and the asthma, and most recently the ear tube surgery always -breastfeeding was there. It has been a very significant part of our relationship.

Anyway I have started seeing a counsellor because I know I needed to talk to someone. Recently I have felt too much like floatsam and jetsam on the river of life swept along with no rudder, no control. Owen weaning has brought to the surface feelings of anger and guilt and frustration which I know are not just about weaning but are also connected to Down Syndrome and the huge expectations I have put on myself to learn and do all that I can for him (and in the almost total absence of EI support) - believe me that is some heavy load.

Ginkgo biloba

Owen has been on Ginkgo Biloba for a couple of months now, Ginkgo is used to support cognitive function and motor planning, I follow the Changing Minds Protocol - he weighs 12kgs so he has 60mg per day. Ginkgo tastes NASTY. Just try it yourself and you will see why it is necessary to hide it in a strongly flavoured food or drink, I hide it in his favourite Blueberry Soy Yogurt.

So have I noticed any differences ? So hard to tell at this young age I can put most of it down to natural development but he does seem more motivated in a general sense - he now crawls laps of the house (using 4 point crawl), getting into cupboards, seeking and playing with toys on his own (he used to do this of course but he has taken it to a whole new level). He had had no interest in spoon feeding himself until about a month ago when he took the spoon from me loaded it up and fed himself the last half of his meal - with "I can do it myself" attitude, high fives all round. I continue to share feeding him his meals each day.

Recently Owen missed a week of Ginkgo when he was sick with a tummy bug. He has been back on it for 2 weeks now and I have noticed the last 3 days he is really motivated again, it makes me think - this is more than just a coincidence or natural development, I think Ginkgo is making some difference for him but obviously not in the Bed Head/Hair department, its still as crazy as ever.....

I is for icecream

Seems Owen is getting 3 teeth at once, 2 incisors and a molar - all on the bottom jaw - these are teeth numbers 13,14 and 15. He flatly refuses to nurse at all during this time so I am still expressing milk, I don't know how long I will continue to express for - finding time to do it is a pain and I have noticed already that my supply has dropped a little, yes, I am still hoping he will return to nursing after this lot of teething is done. He has the milk on his cereal in the morning and he is drinking it from a straw cup during the day (I have to thicken it with a tablespoon of fruit puree to help him swallow easily) but he is drinking larger and larger amounts from the straw cup, which is a relief, but just to make sure he is getting enough fluids I have also been giving him plenty of fruit, soy yogurt and a new indulgence ICECREAM (actually frozen yogurt) and doesn't he lurrrrveeee it, he insists on holding the stick all by himself too, here he is savouring that last little bit on the stick. mmmmmmmmmmmmmmmmmmmm

Day 6

Day 6 and things are getting worse on the nursing strike -now he is refusing the early morning feed - between 3-5am. This is bad because he hasn't worked out how to get himself back to sleep, so we have been awake today since 3am. Col, Owen and I have all had naps I am so thankful its the weekend. This morning I got up and got Owen at 3am and took him back to our bed and on other mornings he has taken a feed at this time. But this morning he just refused to latch on and he grizzled on and off from 3 till 5 when Col couldn't stand it anymore and got up with him.

I have started expressing to maintain some supply though it is looking pretty grim for him starting nursing again. :( I wonder if this is an example of the DS stubborness people refer to?

During the day Owen is being grizzly and demanding too, he is tired and emotionally overwrought (?spelling) and of course teething. It is so hard to listen to him grizzle when I know a feed would solve alot of the problem, it is so hard to lay there awake in the wee hours knowing a feed would quietly settle back to sweet slumber. With my other two boys I have weaned slowly and gently and there hasn't been this emotional turmoil associated with it, but there really is nothing I can do but cuddle him and be patient and hope that whatever happens, whether he completely weans himself or comes back to nursing, it happens quickly.

On Strike

Owen is on a nursing strike !

It started 4 days ago when he bit me (with those pointy sharp teeth) I yelped out in pain and he burst into tears he really got a fright. And from then on he has refused to nurse during the day at all and only once overnight. If I offer during the day he bites me ! I checked his mouth and he is cutting another molar (tooth #13)and I think he might also be getting an incisor as well). After 4 long days (there has been lots of grizzling from Owen and anxiety for me) I am still holding on to the hope that he will take up nursing again, for me it is really significant part of our relationship. And he hardly drinks from his honey bear cup maybe 50 mls a day, not much, not enough in the hot weather we currently have. I have been giving him lots of fruit puree and wet foods to help keep his fluids up.
I have tried nursing him in the bath, nursing when he is drowsy after a sleep, nursing when he is tired and grizzly, he just wont' have a bar of it and I don't want to push it too much, I am just hoping that after these teeth finish moving he will come back into my arms and back to my lap.