Discouraged

We had the follow-up with the ENT pediatric today. Vince did amazingly well and not a single tear. The good news is that his ear seems OK after all and he did not see any necessity to replace the missing tube at this point. For the first time the typomanometro test actually showed a small curve.

I normally like this pediatric we went to, he has done all surgeries Vince has had and he has been listening to our worries related to all ENT issues. However, today was a bit different.

He is of the opinion that it is the mix of languages that is the root to why Vincent is not talking more. I REFUSE to believe so. Mainly because of a lot of research, a lot of personal experience with children with DS and at least trilingual, and mainly on the fact that Vince understands what we say to him regardless of what language it is said in. I am also basing this on many experiences with children with DS who only learn one language at home and have developed their speech in much the same rate as Vince.

Furthermore, I am fully convinced that Vince WILL speak one day. Don’t get me wrong, I am not trying to ignore this issue. I would say I am an expert on the topic, I do enough research, talking, networking, worrying with the right type of peers. However, in Austria, which is very much a one-language culture, it is very hard to get through to people of the idea of any type of bilingualism. All TV shows are dubbed into German. Live interviews with any non-German speaking person is dubbed into German live. A person will actually speak over the voice, which is annoying as hell if you know what the person’s voice actually sounds like. Instead, you know hear a mainstreamed voice in German sounding totally off.
Why do I say this? Because learning a language in a culture like this is very hard. In Sweden (and many other countries) we use subtitles. Scandinavian people in general have it a lot easier when learning English for example as we have grown up hearing this language on TV and in movies all through our lives. Here in Austria, it is different. In my opinion.

I have now an almost 5 year experience with being Vince’s mom and advocate. And I am getting sick of always having to defend this point. And in 99.99% of the cases I am explaining the situation to someone who only knows one language themself.
Yes, my child has Down syndrome. Or Trisomy 21 if you prefer. But you know what? All though it is a genetic disorder, mainly Vincent is a product of Bookie and I. We made him. His whole DNA and chromosomal build up and genetics is from us. Both of us are trilingual with quite a bit of Spanish knowledge on both sides. I am not counting ASL. My parents are both bilingual at least. My grandfather on my father’s side knew something like 7 different languages. Vince is all a product of this. Just like his brother.
I am not quitting the languages! I am not. For one thing it simply would be impossible. I can not stop speaking Swedish to him, that is after all my language. Bookie can not stop speaking German to him, that is his language. And English has always been our common language and still is the language we communicate in. So the languages are all apart of our daily life. It is simply not possible to just remove one.

The ENT’s theory is that when Vince says something I can not understand it is because he can not separate between the languages. So he makes a word out of the three languages and says it. Seriously? Uhh, no.

My theory? I think it is physically still very hard to pronounce and produce certain sounds in his mouth. I think he knows the sound in his head, and tries to say it, and it comes out wrong.

What do I know, he can’t tell me what the real story is. I just know that I believe in my kid. A lot.  I am still not willing to raise him differently that we are raising Edgar just because of the DS. I will not.

10 Responses

  1. Stå på dig. Du HAR rätt!

  2. Äsch, du vet vad som är rätt för din son Kicki och jag håller helt med dig. Han förstår er ju er?!? Det kommer, va så säker.

  3. Tycker Miriam och Alexandra talar klokt. Du vet ju att du har rätt, och om du inte har det så tror jag ändå att det är rätt väg att gå. I så fall kommer han snart att prata, fast obegripligt, och då vet ni ju det. Go girl!

  4. Vilket bra inlägg! Man skriver som bäst när man är upprörd. Att göra det som känns rätt i hjärtat kan inte vara fel.

  5. Isaac is 4.5. He doesn’t speak sentences (that anyone can understand) and has mostly single words, a few two word phrases. My guess is Vince is developing speech exactly like my kid — and we only speak English (and ASL). We don’t understand many of Isaac’s words even though they are all ostensibly in English. Even smart people can be ignorant. If he does what you ask him to do, in any of the three languages, then clearly he can understand you!

    Mary
    Mom to twins, Isaac (DS) and Will, 6-23-2006

  6. Jag hörde din röst säga allt jag läste och jag förstår din frustration och varför du lät så uppgiven och arg på samma gång. Det här är inte första gången du får fightas med läkarna och tyvärr inte den sista… Jag önskar att jag kunde komma med några tips men icke då, däremot en hel hög med styrkekramar.

  7. My coworker has had similar struggles with her DD. I think she will be 7 in June and they speak two languages. Her DD has very good receptive language, but they have issues with understanding her and her clarity. Sometimes I have trouble with my kid and would have no idea what she’s saying without context clues…add in another language (or two!) to decipher and it would definitely be trickier. Doesn’t mean that Vince isn’t speaking quite well, just that it might take longer to guess at what he’s saying, I would think. Especially since kids use different terminology. For a long time I had issues understanding what L was asking for when he would say he wanted a “super”…he meant a Band Aid because we used to have ones with Superman on them. He was exactly right, we just were bad at guessing what he meant in his ONE language. I bet V is doing better than anyone guesses as well. xo

  8. Experter har inte alltid rätt..vilket du och B så väl fått bevisat flertalet gånger. Stå på er (det vet jag att ni gör) men det är frustrerande att läkaren låser sig vid flerspråkighet för att det är “bekvämt” för honom och att han ej mött andra barn som Vince med 4 språk.
    Lixom dagispersonalen på vårt dagis-där är jag felet som lever utanför normen. När jag nu flyttar hem så ska det bli spännande att se vad de ska komma upp med.
    Det grunkas om Gustaf oxå på dagis och som du vet, menar den svenska fröken att om hon pratar svenska med Gustaf så blir han förvirrad. Ja, han blir förvirrad när hon pratar tyska fast med svensk mimik..Österrike är landet av likformighet ..allt är inte dåligt men ibland skulle jag vilja skrika; det finnas andra teorier än era i världen och de fungerar oxå-märkligt vá?
    Kram på er

  9. Our son is almost 7, we are German. I love languages, studied languages and work for a language school. We have a lot of English speaking friends. When I was pregnant I had the plan to let our son learn English as early as he starts speaking although we are not a bilingual family. I crossed that point from our list of things for him to do when we got the diagnosis after he was born…. It did not take me long though to start believing that he might be able to learn (parts of ) a foreign language anyway, at least at some point in his life. He started communicating pretty well quite early (in German of course!), we never had to use sign language. For the last 18 months one of the woman in his kindergarten group has only been speaking English to the kids. When this started, some (not all!!) of the people who deal with our son outside the family gave us all this talk about how this would cut him off communication within the kindergarten and that this would be bad for him etc… I did not believe it! It was for sure not easy for him in the first few weeks but there was always somebody German who would help out when communication broke down between him and the Englishspeaking woman. This did not happen very often though and normally only in conflictual situations. Now he is absolutely fine and he understands almost everything she says. When we went to Greece last summer we noticed for the first time that he definetely knows that what English and what German is. Whenever a waiter spoke German, he said “Danke” when he got his food and “Thank you” when the waiter spoke English. I was so happy! And now, one evening about a months ago, he suddenly started pointing at some of the things on our dinner table and named them in English (like “cheese”, “bread” etc). When he realized what a big smile he got from us for this he wanted to know what all the other things on the table were in English. Since then he often ask me for English translations of words and he remembers quite a few of them after he heard them often enough. And again, we only speak German at home, unless we have English friends around. I am therefore absolutely convinced that Vince will learn to speak at least 2 of the languages that you speak in your family. AND: One of our friends’ son (no DS) is growing up bilingual, his dad is American. He did not speak very much in either of the two languages until he was about 5. The parents actually started to worry a little but in this case EVERY doctor they talked to said that this was quite normal for a kid who was surrounded by 2 languages… They told the parents to be patient. So for kids without DS it is normal that it takes a long time to learn to speak when growing up bilingual. And for kids with DS it is not…?! Cannot see the logic here. Makes me so mad – you have all my sympathy. Love your blog, by the way!!!

  10. I agree with you about bilingualism. We are from Barcelona and speak catalan and spanish since we are born and also catalan people with DS. Our son Jem (also with an extra chromosome) is 2 years a d 5 months and has a friend with DS who understsnds perfectly well catalan (father) and japanese (mother).
    maybe your pediatrtic can’t speak as many languages as you so he projects his uncapability to Vince in this case. By thw way we Love your blog!

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