Wednesday 14 August 2013

Frustrating!

Singing 'eyes & ears & mouth & nose
The ignorance of some people still never ceases to amaze me!

Recently, we decided to buy Felix a new car seat. I travel 1000km each week and he is in the car all that time. The old one didn't support his floppy little neck when he fell asleep, so I wanted something more supportive. The other thing he needed was a new stroller which would fit him now that he is a lot bigger, but can still lay back if he falls asleep. I was looking for very specific things relating to both items, so I contacted a specialist baby shop in the city. The woman I spoke to, over the phone, was very helpful with her suggestions so I decided to make the purchases from that store.

Mummy's glasses
The only time I could make it to the store was on a Sunday so, unbeknown to me, there were different staff members working than during the week when I had called. I walked in and explained that I had spoken to someone on the phone about a stroller for my 'almost' 3 year old who had Down syndrome (thinking that might trigger a memory). I mentioned the stroller I wished to purchase, and that was when it started. No, the woman I spoke to didn't work on the weekends, but did I say my son had Down syndrome? Had I looked at (points to the ugliest, most bulky stroller in the store) this pram? This one is for 'disabled' children! Taken aback, I said that no I hadn't see it but I would like to purchase the other stroller. Was I sure? This other one was specifically for 'disabled' children. I stifled my desire to punch her in the nose, and insisted that I wanted the other stroller.

Not impressed with his alien hat

It didn't stop there. The sales assistant then told me that she had a friend with, "One of them" (referring to a child with Down syndrome). She asked me, "Does 'yours' communicate?" Still feeling offended, but trying to take the opportunity to educate, I told her proudly that Felix can sign over 100 words, and has a few spoken ones. She quickly told me, sounding irritated, " You're lucky. The 'one' my friend has can't communicate at all. I can never understand a word he's saying. He just sounds like he's grunting all the time, but it's OK he's in (a home) now, so I don't have to see him anymore." I was furious at the way she talked about this poor man and was rendered almost speechless. I did manage to try and explain that the tongue is a muscle and people with Down syndrome have poor muscle tone which can also affect their tongue, and can make speech very difficult. She rolled her eyes and said, "You don't need to tell me. I know ALL about it". Aaaaaagh!! Unbelievable....and she works in a store specifically for parents with new babies! I dread to think about a brand new, hormonal Mum, coming to terms with having a child with a disability, walking into that store and being met by someone like that. She should be ashamed of herself.
Jump!

On the positive side, Felix is still doing really well. He is making more and more speech sounds, which is exciting. We have found that he is drawn to the television show, 'In the Night Garden' and, as much as I find it annoying to watch and can't see any educational value to it at all, Felix seems to make a lot more speech sounds when he is watching it. I discussed it with someone at Down syndrome SA yesterday and she said to put it in the 'strange, but harmless' box and told me that whatever encourages our kids to talk is a good thing. She also gave me a copy of a DVD which she also referred to as 'strange, but harmless', and said that several children (with DS) increased their level of speech after watching it, so to try it with Felix.

Felix had a great time at Early Intervention yesterday. We blew bubbles again, this time focussing on the 'b' sound in 'bubbles'. The kids attempted to slice up bananas with a butter knife, which was good for both coordination and hand strength, and Felix rode a little bike around the room more than he has ever done before, which was awesome! After getting over his initial shyness, Felix sat and played with his little buddy, Chloe, swishing cheerleader-type pom-poms around. They chatted away to each other in their own language, which was very special to watch.
Kisses for Aaron after his bath

In the city, on the weekend, Felix spent a day with his Granny and Papa. I don't know who was more worn out when we picked him up, Felix or them? They had all gone for a big walk and had a play at the park. Felix met a little girl at the playground, who instantly took to him. Mum told me that she even picked Felix a flower and gave it to him.... so cute! The three of them had tea parties, read stories and looked at the birds in the garden. When we got back, Felix was inseparable from his Papa. He kept walking over to him and resting his head on his shoulder. They have a special relationship which is really precious.

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