I think maybe we overdid it with appointments this week! Alfie has a severe hearing loss in one ear, and fluid on both ears, so I took him to the naturopath and we had a meeting with a hearing support worker. He had physio last week and our early intervention and speech therapy were both scheduled for this week too. All good, and we are very lucky to have such great help, but my head is spinning!
13 comments:
Alice, I'm so happy to have come across your blog! What a refreshing, wonderful blog you have! I have been reading and reading! I am so happy to hear about all of your advocay work. I, too am heading down the same path. I love your picture of Alfie! Brilliant. Please stop by and say hi. :)Noelle
Can I please link you to my blog? I would love to.
Sometimes all the appointments do get overwhelming! Hope next week is a little less stressful!
You're Right Alice. It's our Attitudes that need to change, as well as our language. You're also right that people will always put a negative spin on a term once that term is changed. It is up to us to educate eachother, and our children from the get go, about differences and how all of us have strengths and weaknesses and talents. That is what needs to be taught to our children, so that ignorance doesn't keep getting passed on through generations!
too many appointments in one week... I know that feeling!!
Oh I remember those days..seems we were at the Hospital more than at home..Now it is once every 2-3 mths :)
Oh I can't wait! I keep looking at Alfie and thinking 'I must encourage laughter' rather than just having a laugh. Someone pointed out that when you have a new baby it feels like you've got to read a whole instruction manual every time you move, and then after a while it all becomes second nature, so I think it might be the same with speech and hearing too - we'll see!
Hi There! Just wondering how Alfie is doing? Noelle
I am so with you there. It does my head in sometimes. Today, Ear Specialist for second opinion. Last Monday was physio, I worked 3 days in between. Next Monday is speech, next Tuesday is new EI centre. Aggghhhh. It really annoys me having to do all these extra things. But at the same time, there is nothing more motivating than your child to get off your backside.
I just noticed that you had a link to the Nova Scotia DS website. I was born in Windsor Nova Scotia. Migrated to Australia when I was 4.
Love your blog. I have a daughter with Down Syndrome - her name is Gracie. We live in Frederick, MD but I am from Nova Scotia.
Our blog is at www.thefrederickfairleys.blogspot.com
although it pales in comparison to yours!
Catharine Fairley
Thanks for visiting my blog, Alice. I have to get some new pictures up soon. Life as a mom of three (one with DS) and working FT makes it interesting.
I am curious to read more about the therapies available in NS.
Here in Maryland, we are blessed with state infant and toddler services, special ed PreK and the various teaching hospitals (Johns Hopkins, Childrens, Univ of Md) and universities like Loyola. Almost too much stuff sometimes!
To give you an idea of what we are taking advantage of...Grace, 3, is now in special ed pre-K every day from 8:30 to 11:30, with 1 teacher, 3 aides and 8 students. We have a private speech therapist we go to every Monday, and Friday she attends the Loyola College Down Sydrome speech clinic (run by Libby Kumin, the author of the DS comm. books). At school she gets 60 minutes of speech every week and her OT and PT visit also 30 minutes every week. It is nice to have it all there. I could not do it otherwise. My husband works in Baltimore, about an hour away, so I am it! And I won't even tabulate her doctor appts!
She is healthy and has had no major issues except ear infections and 2 sets of tubes/adenoids out. But we see a pediatric endochronologist as she has the thyroid problem and has taken daily meds since 12 months...
That is it in a nut shell - back to work for me! Catharine
Re: "Too many appointments"
It does get easier with time in some ways! My daughter is now 14 and the "appointments" are fewer now.
Wish I had the resource of sites like yours when she was young. We often felt we were winging it alone - I really appreciated that there is now a DS blogging community.
p.s. I'm looking for sites from families also with teenagers or young adults. Anyone know any?
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