Summer loving

Summer loving

Tuesday, March 23, 2010

Receptive Language

While we were at AVT therapy this morning, our therapist Julie, who was reviewing the latest report on Mac's progress, noticed that he as been attending AVT for almost 2 years now. I was totally blown away. 2 years already. She remembered when we used to bring him in his infant car seat, and how little he was. It suddenly brought back all of those memories of when he was diagnosed with his hearing loss. We recieved that diagnosis even before his CP diagnosis. He was only 8 months, or 5 1/2 months corrected when he started going to AVT. All we knew at that point was that he had auditory neuropathy and was severly affected. We thought his delays in reaching his milestones were purely because of his prematurity. I think back to those early days and realize that if a hearing loss was all we were dealing with, life would have been a piece of cake! But at the time it was just one more blow in a serious of blows that started on August 2, 2007.

I started to think in the car about whether or not he had made that many gains in AVT over the last 2 years. He isn't talking yet right? But then I shook my head and focused on what he has accomplished. His receptive language as an example is fantastic. He is right where he should be for a 12 month old, which is what he is for his "hearing age" His implant has been activated for almost a year now. He understands his name, and the names of certain things, he listens to everything that goes on around him, he can localize sounds and he can associate certain objects with their learn to listen sounds. His cognition has improved leaps and bounds because he can now hear books being read, and listen to cartoons on tv, and hear songs playing. His latest mapping of his implant was incredible, They said it was the most accurate to date, and he gave the most consitent responses, so we know that this map is even better than his last ones, which will make it even easier for him to decipher speech and other sounds. This is incredible considering we were initally told that children with AN would not receive any benefit from an implant. Fighting for his CI was probably the single most important thing that I have done for him to date. It has opened up the world to him and made it possible for him to learn to read and speak, and learn. I am also confident given how much he babbles, and the new sounds he is constantly making, that he will one day have speech. My biggest goal was for him to have access to sound, and now he has it.
I also figure that with a mom and brother who don't shut up, he is genetically disposed to being a blabber mouth.

Here is a pic from his surgery over a year ago.

Sunday, March 14, 2010

Give me an "M", give me an "I", give me a "C".....

....given me H-I-G-A-N..that spells Michigan.
In our ongoing quest for therapies and therapy centres, I came across another center that offers Conductive Education, and really seems to have an interesting program, so Mac and I are headed there in May. Why not go back to Milford you may ask? Well, since I do not have a built in censor button, I will tell you. I don't want to give my money to a greedy, money focused, bad business, dis-respectful, arrogant, person. I have nothing but great things to say about the 2 conductors that work at Ability Camp, but the place itself is shameful, as is the Director. I told myself that I could put up with the sub-standard and dirty living accomodations, and being in the middle of nowhere, because I was sacrificing this to get Maclain what he needed. But then I started to think, why does it have to be like this? Surely there have to be other places that offer CE in a cleaner, friendlier, more professional environment, where parents weren't talked down to, and the accomodations didn't smell, and wasn't so depressing. I am constantly shocked by some of the individuals involved in the special needs world. So many lack the empathy, compassion, and respect that they should have towards us and our kids. But instead they seem to pry on us because we are in a very vulnerable place in our life, where we would do ANYTHING to fix our kids. I will not go into any more details for fear of being sued or something for defamation, but I will say this to that individual " SHAME ON YOU"

So off to Michigan we go. I am actually quite excited. I have heard great things about the program at the Conductive Learning Centre, and we are going to put Mac into a program this time where I will not be with him for the sessions, and I am eager to see how he does. The price is less than half of the program in Picton, and we are staying at a local hotel with fantastic rates for families attending the centre. I hope it is a good experience for us, and I look forward to Maclain making even more progress. I am very comitted to CE, and I think that we will get alot out of this next experience. I could be making a big mistake, and be wasting our precious therapy dollars, but I don't think I am. I have faith that the conductors at this place will be just as dedicated to the kids, and Mac will get alot out of it. And let's not discount the fact that there is a Target where we are going....a happy mommy is a happy kid!

He is doing so awesome and I am so proud of him. His head control is getting really good, and everyone has noticed. He is pooping on the potty more and more, and is making new sounds every day. I am so blessed to have my two boys in my life!

Sunday, March 7, 2010

Patience is a virtue

I have no patience...never have, never will. And anyone who knows me would fully agree. I hate waiting in line, busy signals, traffic jams, commercials, and so on and so on.
Everyone told me that when you become a parent you learn to become more patient. Nope, never happened. When Chase came along I didn't miss a beat, and continued with my impatient ways. Probably the reason that Chase is the second most impatient person I know.

And then comes Maclain......

In the NICU this is what I heard; "be patient, he will get bigger and stronger", "be patient, he will learn to suck and swallow", "be patient, he will figure out how to breastfeed", "be patient, give him time, he will figure out how to breathe on his own", "be patient, one day he will be big enough and strong enough to go home".
Then I started to hear; " be patient, his milestones will take longer, he is a preemie", "be patient, he had a rough start", "be patient, he will do things in his own time".

I was forced to try to embrace a wait and see attitude, but I just can't believe that "good things come to those who wait". That attitude would not have gotten Maclain a cochlear implant, or access to valuable early intervention, or the equipment he has needed. I wish that I could sit back and relax and just let him be, and see how he develops over time, but I can't. I need to know that I have pushed and prodded, and have done everything I can to make sure he has every chance in life to succeed.

So as much I would love to stop and smell the flowers, I think for now I will be out catching that worm.