Talking about the Talk

The iPad is really a great resource for us. Vince really enjoys it, and we try to make it ‘special’ to play with it, something he does with one of us alone. Without Edgar interrupting.

Communication is really hard right now. Vince signs a lot of signs. Verbs, nouns, adjectives and more. Sometimes he drops the signs when he starts saying a word, sometimes he still signs while saying the word and sometimes he still just signs even though we know he actually knows how to say that specific word.

Taking a closer look at it from the typical DS spectrum:

Mouth:  his oral muscles are actually very strong. He can drink fine (for a long time now) out of a cup, a straw (narrow, long, rubber, whatever he gets from the ST he fixes), he knows when he has food around his mouth (i.e he feels his lips and outer mouth area well) and wipes his face clean on his own when he has something outside his mouth. He can form his lips well and he can blow out candles, blow bubbles, blow into a harmonica and even blow up a balloon. He can blow bubbles in the water, make ‘smoke’ on a glass, blow a flute and lick the peanut butter of his upper lips. He can whistle a short one tuned tune. He very rarely has his tongue hanging outside the mouth, even when tired or watching TV.

Ears: he has tubes in his ears, one has fallen out and we have a pre-op appointment this coming week, and then a new one will be put in asap in the ear that is missing one. Of course this could have an impact on pronunciation. His last typomanometry test was totally flat, and that will be corrected once the tube is back in. We have not done a real hearing test as he would not cooperate last two times we tried. I will have to reschedule that again, and have that looked into. However, the kid hears EVERYTHING if he wants to.

Airways/lunges: we know from his very first lung exam that his airways are on the smaller than ‘normal’ scale, but still in the normal range. This winter (knock on wood) we have so far been spared and inhalation sicknesses and so far no pulmo-issues at all. He had his tonsils reduced when he was 2 and his adenoids were also removed then. They were also removed once again in May 2010. In his next ear surgery, our beloved ENT pediatric will also look to see if they have grown back again, and if so, they will once again be removed.

With that said: on his list of words he knows, are a lot of words he started saying a long time ago but that he does not like to say anymore for whatever reason. Our ST, who I do have a very high opinion of, does not worry about it, but says it is simply not interesting to him to say those words anymore. Examples would be all the B words he used to say all the time (ball, Bob etc). Even though with the ball word is not such a good example, as since the Soccer World cup he just calls every ball foot ball, which comes out sounding something [fo’ba].

Recently Vince has grown increasingly frustrated with us because we do not understand what it is he wants. He will say MAMMA and then a word I have no clue what it means. And I know a lot of Vincentian. He repeats it the exact same way. I will make a suggestion, which he then NO/NEIN/NEJ to. He repeats the word once more. I suggest something else, and he shouts NO/NEIN/NEJ to again. And let me add, he is a bit determined my child, so it can be that he wants a specific plate, fork, cup or a specific apple… I ask again and he says again, this time he gets really mad or throws himself in to a sloppy noodle pile on the floor.

It is really frustrating to not know what to do about this. I have a million questions for the ST, that I hope we get to go to this week after having had no session for a long time (sickness, Christmas, forgot the appointment (bad mom points) etc).

We have also know that he does know how to speak. I am still fully convinced he will speak fine one day. He is picking up on a lot more words almost daily, and having Edgar as a motivator helps him a lot too. Edgar is also starting to speak words now. We have to constantly prompt Vincent to repeat what we are saying, and a lot of times he says it absolutely clear. He almost always repeats some version of the words he is prompted to say. And the words he can say are not only easy words like Mamma, Pappa, he also say long words like fire truck absolutely fine.

I know of Proloquo2go, but really I do not think this is the answer to us right now. And I am really not ready to spend the $190 for it yet. We did download Tap to Talk (the free version) and that is pretty good but of course a lot more limited. And even though they can solve issues like what do you want for dinner, or what do you want to do, it does not help me understand his physical speech.

But oh, the frustration and seeing him trying to communicate and not getting through to us is hard. And frustrating. And heart breaking. And depressing. I also know, like with all the things we have experienced with Vince ever since he was born, that this will also be behind us one day, and then it will seem like no big hurdle at all. It is just that right now, I wish I could wave a magic wand and just let him speak so we understand him.

2 Responses

  1. Håller med..vi har liknande problem med Gustaf även om han inte har DS. Han hänger inte med språkligt, verbalt och pratar inte meningar. Han blir undanskuffad på dagis och nu ska han ev. få rör och ska börja hos logoped. Livia plockar upp allt man säger och byter mellan språken och har många ord men inte Gustaf. Vi läser för honom , pratar tydligt och upprepar om och om igen men det verkar inte gå in (eller in går det men han kan inte säga de ord han vill)och får då hysteriska utbrott. Känner såväl igen din känsla av maktlöshet.
    Hoppas ni kommer på något superduper som hjälper Vince att bli förstådd. Kram

  2. Heia.

    Det er som om du skriver om Jonas : ) han er nesten flinkere til å prate arabisk enn norsk, kanskje fordi han hører konsonanter bedre enn vokaler : ) kan ser mer og mer at han blir frustrert over å ikke klarer å uttrykke seg og da hjelper det ikke alltid å ha en lillebror som prater som en foss….og prøver å hjelpe han – kan da komme litt ekstrasinne….Jonas vil ikke holde på med tegn, han viser mer språk overfor de som forventer at han skal prate enn de som bruker tegn – så han kan overaske oss når han prater med fremmede : ) Kanskje det ville vært lettere om vi var flinke begge to til å bruke tegn hjemme. Vi er overbevisste om at Jonas en dag prater greit : ) Det som er vanskeligst er å ikke undervurdere det han forstår ut ifra hva han klare rå uttrykke seg….Du skal se at med tiden prater Vincent som en foss, og at en da kanskje savner de mer stille stundene…..: )

    Klæm fra Norge

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