Check Up I guess?

We had a Dr’s appointment yesterday. The purpose was to make sure of disability and to see if it was really necessary for us to do private speech as well as speech therapy in Kindergarten. He has ST in Kindergarten on Thursdays, or on those Thursdays when she is not sick, on vacation, or in any other way not there, as seems to be rather often. This ST is also the one who wrote a 3 page assessments of all the things Vince can not say or do. Let me show you part of what she wrote:

Vincent can not talk.
Vincent can not pronounce words.

Vincent can not talk in sentences.
Vincent does not know any grammar.

Vincent has a very large tongue due to his diagnose of Down syndrome. This makes him unable to speak.

I struggled with this one. A lot. Think tossing and turning in bed for three nights.
Considering if it was me? Is it now it is time for me to just grow a thicker skin and get used to all the can nots? Or is my gut feeling right, she just has no clue who my son is and how he communicates?
I decided to talk to our private ST who was FURIOUS at the report. Not only was it inaccurate of his true knowledge, the speech language was also wrong. She also took the letter to a group of other STs who also were pretty disgusted about how this ST communicated with the parents.

I also talked to some other ‘experts’ who all were of the same opinion. I need to set up an appointment and talk to the ST myself, but she is currently sick. Again.

Anyways, back to the appointment yesterday. It was a new pediatric that is a ‘good man’ for the state, which approves extra therapies. It is private, but we get a certain % back, therefore the assessment.

After the ped had use the phrase mongolism three times in less than one minute, I corrected him for the first time, telling him it is an outdated offensive term,and could he please use Trisomy 21 or DS instead? He then told me the medical term is mongolism, and I told him no,not anymore, that has been changed [a long time ago] to Trisomy 21.
He then looked at Edgar and said, but your other son is healthy?
Yes they both are,I said.
What I mean is that he does not have this genetic disease? he said
It is not a disease, it is a chromosomal abnormality.

You can tell how well this is going.

Then he asked Vincent
What is your little brothers name Vincent?
What is your brother’s name,do you know Vincent?
What is the little brothers name?

Vince looked at him and then looked away, doing the ignoring thing to 100%.

Next up was asking questions:
Does Vincent know how to ride a bike alone?
No.
Does he know how to ride a tricycle alone?
Yes, for a short distance.
Does he know how to use a kick bike (a bike without the pedals)?
I don’t know, our physical therapist does not want him to use one as it is harder to learn to pedal if he learns to kick the ground first.
Does he know how to ride a bobby car?
Yes.

I asked if all 4 year olds really can ride a bike? Yes, that was part of the 4-year-old check up. And a kid should know how to ride a trike by 3 years of age.

He asked how we talk to Vince, and when I told him German,English and Swedish he looked shocked to say the least. Oh and signing too. Why the signs? Because they help kids with speech delays.
No one in Austria uses signs with their kids with DS.
Yes they do I said
No they don’t, I know at least 50 families who suffer (yes he used that word) from DS and they don’t sign he said.
Ok, I know MANY that sign.
Not in Austria.
Yes in Austria.

How many signs does Vincent know?
I said somewhere around 400-500?
That can’t be there are only 200 signs.
No, there are more, we use ASL (American Sign Language), but in Austria you can use GUK and Sprechen mit Händer.
Well a normal (there we go again) 5-year-old does not even know that many words?
Ok, well that is how many signs he knows.
That can’t be.
Well it is.

By this time both kids were screaming, and not happy in the office either. It was closed to 5 pm and what we call the arsenic hour. Hungry, tired, moody kids (and parents).

I left the meeting feeling drained.
As a parent to a special needs child you get your dose of all the things a kid should know by what time a lot. You get told all the things your kid cannot. The worse your kid performs in an evaluation, the better as the chances of being approved therapies then increase.
Everyday we celebrate at home what Vince can do and notice small things like Wow! Did you see that,he set the table all alone? He put that back! He picked up all the books and put them on the right shelf etc.
In the real world outside, the focus is on cannots. It is frustrating. And hurtful. and discouraging. And tiring.

And just when you have gathered enough energy to get moving again, you get the written report sent home in the mail. Usually they like to add exactly how delayed your child is. Of course we have a few therapists that is just wonderful and do more than what can be expected,and that is heart warming, and they DO make the difference. But meetings like yesterday, with so-called professionals who are just plain insensitive and look at your child as a case rather than a child, they are just draining.
 

14 Responses

  1. that is so f*ing unbelievable!!

    we all know by now that doctors are imperfect humans like the rest of us and that many are not up-to-date with regards to ds, but to think that this guy was supposed to be some kind of professional assessing vince’s needs, is just beyond belief.

    way to go for stating the truth OVER & OVER & OVER again! i’ll channel you if i ever get into such a frustrating situation myself.

    and way to go vince for all your amazing accomplishments!!

    hope you can keep a sense of humor somehow in all this… xxx tekeal

  2. Hey,
    just wanted to say that I learned to ride a bike at the age of six… I have a friend who learned it at the age of nine… We both do not have DS… My sister did not talk until the age of 3 1/2. She just did not want to. But she understood everything… Kids are different! The ALL are!!
    I often read here, as one of my friends is a teacher for children with special needs, she works especially with DS kids, using the programm “kleine Schritte” in Germany.
    Of course Vince can talk!!! He even knows all the colours of the rainbow!!! My Mum is an art – teacher for children without special needs. She has to teach 90 % of them the colours of a rainbow at the age of 6 or 7, because they never heared of the right order before….
    Don’t listen to stupid people like this doctor… Just try… You are wonderful, and so are your kids, both of them (oh, and B of course ; ) ).
    Anne

  3. Simply outrageous!!! I really lack words. HOW insensitive can someone working with and for people, especially kids, simply be?

    Christina, you and Burkhard are doing an incredible job, offering Vincent (and Edgar) every single percent of a hundret to boost his knowledge, abilities and skills.

    And that’s why I love reading your blog. Not only because of the pics of your cute boys, but because you DO spread knowledge and enlighten many people (me included) about DS and life with it.

    This su**er of a doctor should be reported to the Patientenschutzvertretung (I’m sure there’s such a thing).

    Nicole

  4. Gåshud, tårögd, arg och uppgiven… det blir jag. Och vad blir då ni??

    Funderar på alla cannots… Jesper har oxå en sjukdom då eller? Han har fyllt 5 och kan inte cykla själv. Han kör inte heller kick-bike själv om det inte är med dubbelhjul bak. Men det beror nog på att han inte har nån hemma – måste man ha det??

    Den däringa läkaren borde ta en refreshmentutbildning och kolla kalendern – det är 2010 nu och inte 1810. MORR!!!!!

    Tusen kramar till er!

  5. Yes. That is amazing. I’d have lost my composure back at the beginning. Plain and simple! How can a practicing doctor be SO clueless?!?

    But does his assessment of Vince having so many delays and “needs” mean that he WILL get the therapy you had wanted him to qualify for? This guy is totally inexcusable, but in the midst of it all, is his ignorance going to help Vince benefit from more therapy? I don’t know if I’d call it a “silver lining” but if the idea was to assess his “disability level,” I’m curious what happens next… 🙂

  6. That is absolutely appalling. What an ignorant doctor. Very few typically kids can ride a bike without training wheels when they are 5 years old. I have dealt with a lot of misinformed doctors and therapists and I have NEVER heard anyone refer to my son as having “mongoloidism.” That is crazy talk.

  7. Ich weiss gar nicht, was ich sagen soll….traurig für Österreich und sehr sehr peinlich für die “Fachleute”.
    Ich hoffe, dass Euch in Zukunft wieder mehr einfühlsame und menschlichere Personen gegenübertreten und Ihr solche Situationen als “leider manchmal unvermeidliche Zwischenfälle” abhaken könnt.
    Wer sich so wenig auskennt wie diese beiden Menschen, sollte besser den Mund halten. Ich glaube, die haben keine Ahnung, was sie mit ihrer eigenen Ahnungslosigkeit bei Eltern auslösen können.
    Ich bin echt schockiert und hoffe, dass Ihr diesen Blödsinn nicht zu nah an Euch rankommen lässt!
    Ganz liebe Grüße aus Wien,
    Maria

  8. big big hugs to you. You rock. and that doctor sucks. a lot.

    FWIW, my 46-chromosome six-year-old can’t ride a bike yet.

  9. Du är en otrolig mamma! Jag är så glad att du sa ifrån och inte lät den där otrevlige och föråldrade doktorn hållas. Time to get a clue, Mr! Vincent kan känna sig lycklig att han har föräldrar som dig och Bookie som står upp för honom och lär honom allt han kan behöva kunna och veta. Det finns ingenting som kan stoppa den lille killen!

  10. Tårarna rinner när jag läser vilket bemötande ni fått – och då rör det inte ens mitt eget DS-barn. Jag kommer och tänka på de starka mammorna i Sverige på 60-talet som vägrade lämna bort sina barn och glömma att de fått dem, vilket läkarna rådde dem till. Och att läkare ansåg att “försöka lära någon mongolid något var som att piska en slö häst”. De mammorna visste att det inte var så och du vet också att det inte är så. Läkarvetenskapen och de professionella har inte alltid rätt – med det vet du ju redan. Och det är ju Vince ett levande bevis på!

    Mammorna på 60-talet var modiga, starka och banade väg för oss som får barn i Sverige på 00-talet så att våra barn får andra förutsättningar. (Även om det finns mycket kvar att göra i Sverige också!) Av din blogg att döma så tror jag att du är Österrikes motsvarighet.

    Kanske kan du känna igen dig och finna lite styrka och i Tom Allandhs filmer om Martina om du inte redan sett dem. De finns mycket svart i filmerna också som gjorde att jag funderar på min sons framtid som vuxen – men någonting jag tog med mig (eftersom jag själv oroar mig för vår sons språkutveckling) är hur fantastiskt duktig Martina är på att uttrycka sig via språket.

    http://www.dn.se/ledare/signerat/tom-alandh-har-nagonting-att-beratta-1.468020

  11. Kom på en sak till när det gäller begåvning. En kurator sa något till oss som jag har tagit med mig. Hon sa:

    “Det här med begåvning är ju lite svårt ibland. Vi alla som sitter här kring bordet, ingen av oss har ju begåvning nog att vinna Nobelpriset. Men det är ju ingenting någon av oss mår dåligt av eller lider av. Hur stor begåvning man har blir först ett problem när den hindrar oss från att göra något vi vill. ”

    Mitt budskap är att läkaren dömde Vincet utifrån sin egen referensram och vad han tyckte är normalt och onormalt t ex att en 4-åring borde kunna cykla. Men om Vincet inte mår dåligt eller far illa för att han inte kan cykla ännu så finns det ju inget problem – ur Vincents perspektiv. Och det är väl det som är det allra viktigaste?

  12. Blir så ledsen när jag läser hur dessa “experter” uttrycker sig. Stor bamsekram till er alla.

  13. Fruktansvärt att ni blev utsatta för en så inkompetent människa! All heder åt dig som orkade stå emot kritiken och rätta allt det felaktiga som trillade som grodor ur doktorns mun. En sån läkare borde nog ta och gå om sin utbildning eller bli något annat, typ brottsplatsstädare.

    Jag tycker att Vince är en alldeles fantastisk 4-åring, även med “normala” mått mätt. Min mellankille lärde sig att cykla just före sin 9-årsdag, han är sen grovmotorisk men inte har någon kritiserat oss för att han inte kunde före. Sen tror jag också att specialbarn kanske överutreds, har en väninna som har en 2½ åring som inte pratar mer än ett par ord, och ingen har öht kommenterat det nämnvärt.

    Styrkekram åt dig som orkar kämpa och kämpa!

  14. […] when you have to go to a Dr like we did in May when we had this experience go […]

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