Following on from my previous post I wanted to explain that even though my son is now verbal I've come to realise its not what I expected as I thought it would make things easier but it hasn't....
The day I heard my son say "Daddy" his first proper word after his 5th birthday made me cry...I never thought I would ever see the day when he could speak words. He had babbled/ vocalised for years before hand but never uttered a word till that day. As the months went by we found he would learn a word then forget it for a while then needed to relearn it but soon he built up a list of words he could say. Everyone was excited that he had found his voice and we were told that our lives would become so much easier now that he was learning to communicate.
Now almost 2yrs have passed and his speech has come on amazingly but we discovered that it's all copied, he repeats what he hears others say around him, ask him a question and he repeats the last word or two back to you rather than actually give you an answer. His teacher tells me that sometimes when she tells the class to be quiet he will repeat and tell the class to be quiet! I find this funny & amazing as it shows how much he has progressed from being non verbal.
BUT...yes there always has to be a but... (I try not to be negative as I know there are plenty of other sen mums who long to hear their child first word) I find myself becoming more and more frustrated by it all as although he can talk, he cannot communicate. I've had people say to me that "at least he is now verbal so your lives will be easier now" - no it isn't, nothing has changed, in many ways it's been harder as I get frustrated and I'm sure he must feel frustrated too but can't say.
At the end of the school day I ask him " did you have a good day?" He just looks at me, I ask him "did you eat your lunch" another blank stare. If I ask "did you eat ice cream he will simply repeat "ice cream". He cannot tell me what he has done in school, he cannot tell me if he was happy, sad or tired at school, he cannot tell me if he played with someone at playtime. I have to rely on his communication book to give me a small insight into what his day has been like and some days we don't get his book home so I have no idea what he been up to or if he has eaten his lunch.
He still cannot communicate his basic needs, relies on me 100% to work out what he wants.. .he now signs "juice" at home if he wants a drink but doesn't verbalize it. Just recently he has started to pull us to the kitchen so we think he is hungry but sometimes he isn't and just wants to play in there but it's a start , it's communication. At breakfast I ask him what he wants, he just repeats what I say I.e toast, cereal and if I make what he has repeated he gets upset and runs away or turns his back to me...but if I give him pictures of toast and cereal he will choose and if I make it he will accept it and eat it. Yes he can talk but he cannot use speech to tell me if he is hungry or what he wants.
There are days where he will come up to you, muttering away but making no sense at all yet he thinks he is and looks at you expecting you to understand what he has said, other times he will stare at you intensely as though he is talking through his mind and he expects you to understand! It very hard and frustrating.
This past weekend had highlighted that despite his ability to talk he cannot seem to communicate what is bothering him. I went to pick him up from school to be told that he was very sleepy and hot. I put it down to his not sleeping at night and when we got back to the car I could see he looked unwell, gave him a cuddle and he didn'tresist, told him we were popping in to see his Grandma at the Pool as she was taking my other son for a couple of hours. He refused to have anything to eat or drink, he kept doing the shhhhh sign and wandering around looking vacant. I could see he was getting worse as the minutes ticked by so we bid our farewells and went home. He fell asleep on the 5 min journey home but woke up once I stopped the car. Got him out of his seat and he couldn't walk anymore so I carried him in , lay him on sofa and he just burst into tears and looked incredibly sad. Sat with him on the sofa until he fell asleep again. A few hours later he woke up, got distressed and crawled off the sofa onto the floor where he just lay whimpering. I laid down next to him with my arms round him asking him what was wrong, what was sore but he just kept looking at me with such sad eyes and burst into tears again...I felt so helpless as I didn't know what was wrong, what was hurting him, I had to rely on myself checking him all over trying to find any visible clues but there was none. There were times when I just wanted to hug him and tell him it would get better but he didn't want me to touch him, he sat on the sofa alone and crying..it broke me. He slept on and off for the next 27 hrs, as time went on he started to accept my hugs , I wanted to show him he wasn't alone, even though I had no idea what was wrong I just wanted him to know that I was there for him no matter what.
I absolutely love hearing his little voice , when he started to speak I naively thought that everything would be so much better, that we would understand him and be able to have simple conversations, that I would finally get a small insight to what goes on in his mind, what he thinks, that life would become much easier with him being able to tell us what he wants/feels but in fact its been the opposite. He is the same as when he was non verbal. He may can speak but he remains locked in his mind unable to express his thoughts, feelings, what he likes/wants. It continues to be a guessing game leaving us feeling frustrated.
He is now slowly on the mend from this nasty virus but we still don't know what was wrong. We have managed to avoid hospital for fluids as I know to syringe it into his mouth to keep him hydrated even though sometimes he fights us off but as long he gets a tiny amount in it helps. Today he hasn't been himself and even his teacher noticed but again we don't know why...his teacher asked us how he was after bumping his head at school yesterday but we don't know as we have asked him if its sore but he is just repeating our questions so we have no idea if he is sore.
Maybe one day his speech will be used to communicate with us but for now we carry on the guessing game, keep perservering with signing and visuals.