Last week, I posted a bit about our meeting with the representative from the hearing and speech center. It was an emotional discussion and I have been processing his input. He was the first person who I have met outside of the CHARGE community who knew several adults with CHARGE. So of course I quizzed him about how they were doing, level of independence, etc. I wanted an "unfiltered" view.
At first I got really excited thinking about it all (I had this random vision of everyone at a cocktail party... socializing, laughing, enjoying just a very "typical" evening together.) I assumed that since I didn't know about them through our CHARGE group, they must be doing so well that they don't need the support.
Unforunately, I learned that simply wasn't the case with these particular individuals and they definitely had their fair share of challenges. And despite my best efforts, the tears started flowing.
While that was discouraging, he reminded me that early intervention wasn't stressed as much 20 years ago. He believes what we are doing now will make a huge difference in Max's future. Additionally, he stressed over and over...and over and over again...to have high standards for Maxwell and don't let people discourage or pity him because of his challenges.
So I guess the lesson is...keep on doing what we're doing. And don't take "no" for an answer.
6 comments:
I agree with that 110% Amy. Its true we can not look at adults who have CHARGE like our kids, the did not get the same treatment our kids are getting today. Also they just came up with the name CHARGE not to long again so who knows who else is out there living on their own in their 50s doing well for themselves with CHARGE and they do not even know they have CHARGE themselves. I am reminded everytime I see a doctor, nurse or therapist not every person with CHARGE is the same. Which really makes it hard on us. We do not know the life span of a person with CHARGE we do not know if they will have a real job or live on their own. They are all so different its hard to tell.
Hang in there Amy, I see you doing great things with Max every time you post, you are doing awsome!!
Hugs,
Crystal and Eva
yep thats rite and dont listen tothose who say no
Max is brilliant and will probably be in politics or something... I see him in front of thousands communicating to people the importance of early intervention or whatever he's passionate about. I see you promoting that in him too Amy and it is completely different now with how children are receiving treatment and help with their special needs as opposed to 20 years ago. Max is in good hands!!! Keep doing what you're doing! ;)
This is true even for "typical" preemies. I've seen a vast difference between my son (early intervention from birth) and preemies who did no EI. It's a shame that more parents who have eligible children don't take advantage of these great services. Keep up the great work, Mom!!!
My mom was told (about 20 years ago) that "the world needs janitors and ditch diggers" in response to her demands for support for my brother's disablities. 1. Those are honorable jobs. 2. How dare somebody tell a 5 year old that they don't have the world at their fingertips? He was defeated before he even began...
Max is receiving (and responding to so amazingly!) such a huge amount of support and dedication from his community. He may not live a typical life, but he will live a full and happy life.
I know how you feel. I will never let "can't" be a part of Abbie's vocabulary. Even though she and Max have different issues, all kids with challenges should be given every opportunity to thrive and be their best.
Unfortunately, the EI program here in WV is facing major, major cuts. I'm sick about it.
I can't believe how big Mighty Max is getting! Wow!
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