Life in the "hearing" world...

OK, so before I start writing, you must picture this.....Chris and I just spent 45 minutes doing an all out search of our house for Matthew's sound processor to his cochlear implant! You know, complete with trying to sign to Matthew "where's your ear?" and doing a lot of pointing and getting more and more frustrated as time went on. Yes, the processor remote has a great little alarm that goes off and beeps when he removes the processor from his head but unless are right with him when he takes it off, it doesn't help much! He has gotten pretty clever with his hiding spots from baskets of clothes, the bathroom, in the bookshelf, and the latest was in the case of water sitting on the kitchen floor! Guess it is his way of saying - "Hey Mom and Dad, I can just turn you off when I want to, and now was a good time!" And, of course he would do this the night before I am trying to get his new backpack together for him starting another preschool year at the deaf and hard of hearing program through the IU!!! But anyway....mission accomplished and all is well again!

So, where in the world are we in Matthew's hearing world? Well, as you know he is now 3 1/2 years old but he is only around 8 months old in a hearing age. He has made big strides, and did great with his appointment down at CHOP with his audiogram. There is no doubt that he is hearing things, and we only had to make a few adjustments to his auditory mapping so he can hear lower tones. Now, we just have to continue to work really hard attaching meaning to sound for Matthew - he has detection down, now the really hard stuff comes like learning what things are both with signing and with words and sound. He is really doing awesome in the signing world, and his new daycare preschool class has been an amazing transition for him as they are teaching the kids signing and are using total communiction with him. His new teachers have been amazing. He goes there when the IU is off, and he's back to the IU in the morning, and then his other preschool in the afternoons. He LOVES being able to communicate and interact with other kids!

AND, something very exciting has happened in the past 2 weeks or so - Matthew KNOWS HIS NAME!!! He turns to his name being called pretty consistently which has been so exciting for Chris and I. We aren't at 100%, but we definitely think he now knows that his name is Matthew - that is so HUGE!!! We also notice him turning his head a lot more at certain things, and he's more aware of sounds around him. We catch him taking his magnet off of his head because he knows the sounds stops them - smart cookie he is!!!But, we can now yell "MATTHEW" and he does stop what he's doing an looks us - HUGE!!!

Speech therapy is ongoing at the hospital twice a week and he should be getting speech therapy twice a week as well with his IU preschool. He loves his speech therapist Miss Sue and so do we! She's very encouraging and always helps us see the positive things going on. Not that we don't like going to CHOP, but we always feel like they think he should be further along with things in his speech.

However, I think they forget the extensive white matter disease throughout his brain, the cysts in both temporal lobes, the movement disorder, and most of all - the progress that Matthew HAS made and continues to make every day! We have thought a lot about "labels" recently and that is one thing that we don't ever want to do is label Matthew. He's MATHHEW and he will do things at his speed and as long as we continue to go in a forward direction life is good!

The hard part right now is the development of speech. Matthew is struggling to make sounds and therefore words. Miss Sue seems to think Matthew has a form of apraxia meaning that he has a hard time processing words. There is a motor dysfunction of some sorts and its' rather heartbreaking watching him try to purse his lips and imitate your face trying so hard to make sounds come out. He is babbling all of the time now, and he's making a lot of new sounds and he does repeat some sounds like mmmmm, aaaaaaa, bbbbb - and we really did think he said "elmo" and "bye" to the ice cream man the other night. It's almost like if he doesn't have to think about how to say the sounds, they come out quicker than him concentrating hard to try and process and imitate them. So, we constantly are talking and making sounds to him using sounds for everything we are playing with or talking about.

He still sits in his booster seat for us to do "speech sessions" at home outside of play time and he does pretty well even though it's hard work for him and it's frustrating sometimes for him and for us. He is still working so hard to learn something as simple as blowing bubbles, but he still can't quite get that down - but he definitely works hard at it! He LOVES stickers and band-aids right now, and we are using those as rewards and motivation right now. He does get so frustrated when he wants to communicate something to us, and we have found that he has some behaviors that he does which makes him feel better at times when he is frustrated which we are trying to work through with some occupational therapy.

We loved the occupational therapist which is our third appointment of the week (yes, I am also working 36 hours a week as well!)but she gave us some great information on kids with sensori-neural issues like Matthew has. And, she confirmed that Matthew does well with things quickly and without thinking about them as he imitated her blowing raspberries with his mouth when he was swinging but he couldn't repeat it when she tried later in the session. We also bought a big yoga ball that we use for speech and for some OT at home, and Mom-Mom got him his trampoline which helps too. We also moved the rocking chair to the living room so we can help his stimulation needs quickly if he starts getting upset or doing other things that aren't what he should be doing.

So, it's really hard work - and I'd be lying if I didn't say that is not all happy and joyful moments. Don't get me wrong - most of them are, but there are times when we get so discouraged and struggle especially when we see kids his age and hear them talking and communicating so well. But we then look at where we were 6 months ago, and are so proud of what we have overcome, learned, and what Matthew continues to do every single day. He may not be able to use his voice to tell us what he wants, but he sure does have a special way of getting his points across. So, we are in for the long haul and will continue this journey into the hearing world for Matthew. That's right - Matthew who now knows his name for the very first time in his life!!! We are pretty psyched about that and can't wait until we start hearing some more words on a continuous basis!

Tomorrow's the first year of the new preschool year - Matthew will be happy to see his bus driver tomorrow morning, although I will be sad he won't be in the car with me babbling away to the Baby Einstein DVD in the car! He also loves Miss Becky, his teacher at the IU - so we will see what this year will bring!!!