Thursday, February 22, 2007

Our boys are growing up so fast!

Wow! Looking at these pictures it really strikes me how quickly Noah and Alfie are changing! Alfie couldn't really hold his head up two months ago - and now look at him! And Noah is getting ready to hit the road as a Canadian cowboy. He's been talking with a pseudo-Canadian accent all day today "I ceen't fix it" "I'll pud it in my beeg" mixed in with English "mummy"'s. He's not got it quite right yet, probably because he's learnt it from Bob the Builder (USA version), Elmo, and various 3 year olds. Bless. Alfie is eight months old next month. And Noah is three and a quarter.

Alfie has some carrot

Hooray! I have finally found the camera cable so I can download the pictures that have been stacking up since Christmas. Here is Alfie having his first solid food.

Tuesday, February 20, 2007

Working with Doctors

My friend has been having a hard time because her child, who has Down Syndrome, has not been well. Her behaviour changed significantly, she stopped communicating, and was less coherent. This obviously has caused a great deal of worry for her parents - further compounded by the fact that the doctors, for over a year, could not see past the diagnosis of Down Syndrome. Even though her social skills started to decline, the doctors were still saying that this was 'normal' for children with DS (social skills are usually very strong in children who have DS). After a long struggle, and by engaging a naturopathic doctor, they have managed to find a treatment that is finally benefiting their daughter - a combination of anti-fungal and pro-biotic medicines.

One of the things that strikes me is that ensuring the best medical treatment for your children can be difficult at the best of times, but when they have DS it's a minefield. Occasionally doctors fail to see symptoms that would be obvious to them in typical children. Sometimes the Down Syndrome diagnosis can throw them off their game. This is just a little example, but when Alfie was a month old he had an eye infection and the doctor at the hospital wrote the diagnosis 'Down Syndrome' on his prescription - as if a short course of anti-biotics was going to treat his extra chromosone! She was so caught up with the Trisomy 21 that she failed to accurately fill out a basic form.

Another issue is communication - a friend of mine who had an intellectual disability was treated in hospital for a bowel cancer operation, and one day when I was visiting, a doctor asked him if he had "passed wind". There was no way that David would understand such a euphemistic question - but when he answered 'yes' the doctor ticked a box on his form. I had to point out that he would say "yes" to pretty much any question he didn't understand - but it didn't make much difference. Unfortunately, David's operation had gone wrong and it wasn't picked up until it was too late.

So my questions are these:
How do you persuade a doctor that it isn't 'just Down Syndrome' that's the problem?
How do you come across as a knowledgable adult rather than an over-anxious parent?
How can we teach medical practitioners to communicate effectively with our children as they grow to adulthood?

I don't have any firm answers yet, but these are my initial ideas:
If you film your child regularly, you can show medics how you expect him to behave when he is healthy and well.
If you type up notes and print copies out for doctors they seem to be able to understand better than if you tell them things.
If you keep a log when illness occurs (again, typed), you can accurately answer questions about dates and times, etc.
Take a notepad and pen along to doctors appointments and obviously write down what they say. Then use the long words again when you are talking to them.
Tell your doctor if s/he uses language that offends, or does not treat you as s/he should. In my experience doctors appreciate it if you talk to them first about their behaviour before reporting above their heads. If all else fails, don't be afraid to make a complaint if you feel it will improve circumstances for other patients who have intellectual disabilities.
Tell your doctor if s/he does something right. People do their jobs better when they get positive feedback.
We need to get involved with the training of new doctors and encourage placements and interviews with medical staff so they get to know children who have DS at the very beginning of their careers.

Do you have any more tips or ideas?
I've found this excellent information produced by the UK Down Syndrome Association in conjunction with St Georges Hospital. It includes tips for diagnosing illness with people who have learning disabilities. Is there anything similar in the USA or Canada?

I also need to say how fantastic all the medical staff at the Royal Surrey Hospital were when Alfie was born. Really truly wonderful. So professional and supportive. They talked about 'possibilities' rather than 'disabilities' and gently pointed us in the right direction when things were difficult. It meant so much to us to have professionals who really knew their stuff, working with us to help our little baby. The intensive care staff at the special baby care unit even suggested that Mat and I go out for a meal while they baby-sat! I am genuinely grateful for the incredible support we've received. It's made all the difference to Matthew and myself.

Nuchal Fold Testing

I've been chatting with another blogger parent, Catherine, about the new pre-natal testing that's being introduced across the board for all pregnant women in the USA and Canada. It's been used for all age groups in the UK for some time now so I am interested in the debate here. Interestingly, both Catherine and I sort of benefited from the tests - she had time to prepare for the birth of her baby and be positive about it, and Matthew and I had made the decision not to take the tests but were pleased that we'd had a discussion about Down Syndrome before Alfie was born. I believe that people are unlikely to terminate a pregnancy if they really understand what Down Syndrome means, but it's that knowledge that is so hard to share.
Anyway, here is our chat (slightly edited):

Dear Alice - thought you might like to see what has been going on in the
news down here re DS...
"Today NDSS issued the following press release and resolution related to the American College of Obstetricians and Gynecologists recent recommendations regarding prenatal testing for Down syndrome. This resolution was passed by the NDSS board of directors after extensive and thoughtful discussion. As you know, NDSS has actively engaged with the media on the topic of prenatal testing for years, and we have successfully secured quotes from constituents in many media outlets, including the New York Times, Wall Street Journal, CBS Early Show, NBC's Today Show and many others. We will continue to discuss this topic within NDSS and with other Down syndrome organizations, so that we can be a stronger voice for the Down syndrome community externally. And as we state in the press release, we will continue to engage with health care professionals, including ACOG and other organizations, on an ongoing basis to improve the information and resources that are provided to new and expectant parents. We welcome your thoughts and feedback."

Hi Catherine,
Thanks for that. I'm interested in this because in the UK everyone has the prenatal testing no matter what your age. It causes a lot of stress and unhappiness for people, but bizarrely, for us, it was sort of a good thing - it meant we thought about whether or not we would keep a child who had a 'chromosonal abnormality' and we decided that yes, we would love our children no matter what. We declined the tests because there was no point and we'd rather meet our children as people before we started thinking about their medical and genetic makeup.
If we hadn't had to think about Down Syndrome when I was pregnant, and if we hadn't made a positive decision that DS was an OK thing to have, it might have been harder for us when Alfie was born. I'm sure we would have come to the same outcome eventually, but as it was, we knew that we both felt Down Syndrome was OK.
I think it's crucial that people get to know more about DS, having our children in mainstream schools is a start, but really the medical staff who do the tests need lots of education. If the people who are treating you when you are pregnant and vulnerable are ill informed, it can hit you hard.
I'm glad the discussion is going on in the States and in Canada, even if it is unearthing quite a lot of bigotry. Right. I'm going on a bit now - think I might put something in my blog. Not sure yet.
Very best to you and your Fairleys

Hi Alice
Thanks for the message. I too am very interested in this issue!
Strangely enough we decided to get the "basic" test done and kept going as we got "abnormal" results until we finally had the amnio knowing that she was probably a Trisomy 21 baby. It was confirmed by the amnio. I just needed to know. Type A I guess. And medically, I wanted to have the safest birth for her - locally or at Univ of Maryland. In the end, all we needed was the
local hospital with a neonatalogist there. And I too felt I had a choice. Even though we would have had her either way, I felt like I got to choose to have her and it gave me a greater sense of
control over the future. I read, I researched....We prepared everyone, especially our two sons. In the end, I am so glad we knew. We were ready for her.
But that is the whole point, people should be allowed to choose what tests, and when and how, not dictated to by the government! I just want better education for the general public and the doctors too. The doc who did the amnio told us that 80% of all people with the DS diagnosis
choose to abort! Scary. He also told me to expect a daughter who would be 40 years old with a 6 year old mind. Asshole.
Got to run. Nice chatting!!
p.s. I had the nuchal fold test done. It came back 1 in 750 and a "DS positive" result, here, is 1 in 250..But to compare, my friend, with a typical child, had a normal reading of 1 in 10000. So that made us more nervous ( I had the AFP first and then the nuchal fold). So we went ahead and had the multi-dimensional ultra sound - they saw a normal heart but some calcium deposits which can be a sign of DS - so the 1 in 750 became a 1 in 250 according to the geneticist (the results had to be lowered threefold) and the AFP test (bloodwork) went from a 1 in 10 to a 1 in 3.3 chance, which made us decide to do the amnio.
Many people are not aware of the thresholds - again more information to be disseminated (another new friend had an AFP of 1 in 240 and thought they had less than a 1% chance of having a DS baby so pursued no further testing - they were devastated when their baby was born - she never knew that 250 or lower was a "positive" result). Many people here choose not to do amnio because they say there is a high risk of miscarriage (1 in 100). I have yet to hear of anyone ever having a miscarriage from amnio - do you know of anyone?

(... then the rest of our conversation is about punching a Dr Weiner - so I'll leave that to your imagination)...actually, I do know someone who very nearly lost her baby due to amnio, but the hospital carefully monitored them both and all was fine.

Sunday, February 18, 2007

In My Language

This film is by A.M.Baggs, a woman who has Autism. As well as being a mesmerising artwork, it is a powerful statement about difference; questioning the value of so-called 'normal' ways of interpreting the world. During the first part of the film she uses her voice and visuals, she then translates her language and describes her intentions via a text to voice machine:

"Only when the many shapes of personhood are recognised will justice and human rights be possible"

A.M.Baggs has more work on You Tube - she posts as SilentMiaow. Matthew and I were blown away by this. It's interesting because I've known quite a few people who've been on the Autistic Spectrum, some are friends and relations, others I've worked with when I've been leading arts workshops. One woman in particular reminds me of Ms Baggs, she interacted with her environment by writing letters on everything. We did some interesting drawings together but it strikes me now that I just didn't really know her at all. It's confusing to me that I could known someone and not have known them at all.

I read today that there are some new breakthroughs in research into ASD. The genetics of the condition are being analysed and soon 'there may be an end to autism'. Hmmm. I hope that they don't mean 'an end to autistic people'. Pretty soon I wouldn't be surprised if they introduced pregnancy tests that tell you if the fetus has DS or ASD.

Interestingly, Mat's best man, Pete is a lecturer in Economics at Univerity College London. The Psych department there tested all the lecturers in Maths, Economics and Engineering for ASD - in particular Aspergers Syndrome, and according to Pete, everyone had it to some level or another. His results showed he was 'off the scale'. Might be why he is such an interesting man. These steps towards a mono-culture where everyone is 'normal' are hugely worrying.

Thursday, February 15, 2007

Artists' Studio

Check out this wonderful artists' studio in Ottawa: H'art of Ottawa -
"a unique and innovative art studio where self-expression and a sense of place are encouraged and celebrated for people with developmental disabilities. Through the common language of art and self-expression, the artists of H'Art contribute to the community and the cultural life of Ottawa."

Thanks to Susan from the NSDSS for drawing this to my attention. The website's really well done; mature and respectful. Here are works by just two of the artists (I'm going to add more soon - there's so much to choose from!):

Carrie J.
"Passionate, articulate and knowledgeable about the Group of Seven, particularly Tom Thomson, Caroline is an artist whose work continues in their tradition of Canadian landscape painting. Insightful and resourceful, she contributes to the studio through her positive suggestions and enthusiastic sharing of information."

Jessie M.
"Jessie's work reflects her passion for feathered creatures. Annual trips to Prince Edward Island also inspire her finely detailed compositions."

The Cutest Baby in Halifax

Hooray for Alfie the cutest baby in Halifax! It's official!!!

I entered him for Peninsula Parent Magazine's cutest baby competition and he's WON!!! Mat said we would have a parade if he was the winner, so I'm busy planning. The article isn't published yet, but when it is I'll update this space. Hooray! Hooray! Hooray!!!!! Hooray for Alfie! Hooray!!!!

Friday, February 02, 2007

Too many appointments in one week...

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!