PatsFans.com Menu
PatsFans.com - The Hub For New England Patriots Fans
PatsFans.com - The Hub For New England Patriots Fans

Extremely OT: No longer a 'Special Needs' parent.

Status
Not open for further replies.
Box_O_Rocks said:
T, your a student of the human mind? Thank goodness mine is safe from you.

Thanks for sharing!
I truly believe that my step-father (the most amazingly intelligent person, and yet dumbest nuclear physicists you'll ever meet) is from the same home planet as you. You figure one of you brilliant freakazoid aliens out, you figure them all out. I've got your number, Buster.



And Big Britt beats out Gorin and all others to be our road grader at Right Tackle this year.

(Edit: Oh wait, I forgot about Kaczur. Lemme think on this a bit before I challenge you alien mind again.)
 
Last edited:
Fantastic story, T-shirt!
My best friend's kid has the same diagnosis because he didn't fit the "Autism" criteria, whatever that is. They have a very tough time, as you can imagine, and they can onlt hope for an outcome like yours. I'm sending him a link to your story...It's unbelievable and one that keeps us parents with disabled children hoping and trying new things.
Great job by you and yours.
 
Such a powerful set of experiences!

So very pleased that you told us.

May you always remain so determined and effective ... in your youngster's interests.
 
I'm very happy for you. My niece isn't talking yet. Otherwise, she's extremely bright. So they checked her hearing, and sure enough, there's a blockage. She's getting some treatment now, but she may end up getting the tubes. Maybe I'll recommend a chiropractor.
 
Great story, great to see you stuck to your guns, parents do know best.

My Grandson lived with us for the first 7 months of his life, he did well up to pre school, when he hit K he was a mess. Acting out all over the place tried to assault the teacher, had to go get him a couple of times. Tried to find help, knocked on a lot of doors, most folks were content with a label and not much else. He is now back with him mom now, and we are still very much a part of his life, we stood and stand by his side and overall is doing pretty good. Does ok in school, he rides BMX, plays guitar and is involved in BSA. I have to give my wife and I credit as we have pretty much put our dreams on hold for this little boy, now 10, however would not trade our sacrifice or what we have done for a pot of gold.

FYI I am a retired Social Worker, grad from BU, who used to deal with special needs kids, I walked away from this field, however have a more respect than ever for parents who are able to overcome systems, particularly medical, to find help for their child.
 
I'm very happy for you, T-Shirt -- I know how it feels when things aren't right with a child. Thankfully, your optimism didn't desert you.
 
Last edited by a moderator:
T-ShirtDynasty said:
I gotta share with somebody, and so many of you are friends here.

Three years ago my son, 2 at the time, was diagnosed as having "PDD-NOS" which is kind of a bullsquat diagnosis in my opinion, that stands for [SIZE=-1]Pervasive Developmental Disorder - Not Otherwise Specified[/SIZE]. I believe it means, 'we have no fricken' idea what's wrong with your kid'. Anyway, it's a sub-classification of Autism, with Autistic-like behaviors.

The big deal was, at the time, the kid wasn't speaking and made no attempt to. So he was slapped with PDD-NOS label, and made eligible for a special developmental pre-school, in addition to the in-home speech therapy three times a week with a Speech Pathologist that he was already receiving.

Just prior to his initial diagnosis as PDD-NOS, the Speech Pathologist had a full spectrum hearing eval done. (He HAD passed his newborn hearing test and well-baby check-up, etc..) The Hearing Eval and Timpanigram showed a 100% 'blockage' in one ear, and a 90% blockage in the other ear, with the most significant hearing loss in the high frequencies and low frequencies. This meant when you said his name, he turned his head because he could hear the mid-range, but it sounded like being underwater, without being able to hear the sibilance that makes the human language recognizable. And that's why he passed the very simplistic baby hearing tests. The kid was deaf! (And at this point had already developed a 200 word vocabulary in sign-language thanks to the Speech Pathologist.)

Anyway, I disagreed with the diagnosis of PDD-NOS, and thought clearly it had to do with spending the first two years of his life deaf, without his parents knowing about it. I thought for sure, the speed with which he picked up sign-language, and used it to communicate with us showed there was nothing wrong with the brain. BUT, the diagnosis was necessary for this Developmental Pre-School that we all wanted him in, so I was told not to argue too much.

Shortly after starting the school, we got the hearing cleared up... the Ear Nose & Throat Specialist spent two minutes with him before opting for surgery, the dreaded "Tubes" operation, which I thought was absurd. We ended up taking him to a Chiropractor (with me kicking and screaming and laughing my head off at the very idea that a Chriopractor could help my kids ears!) who put one hand on his neck and said "Oh my GOD!" Worse neck on a child he ever felt, and believed it had to be related to the hearing. I was VERY very skeptical. He adjusted my kids neck and a week later the Timpanigram showed both ears were 100% clear. The ENT shook his head and tested him three more times. Then he passed his full-spectrum hearing test with flying colors and has been hearing fine ever since. But he was very, very behind, developmentally, where he should have been at that age, and the goal of the school was basically to catch him up (in my mind).

Since the three years after fixing his hearing and attending full days at this Developmental Pre-School, and speech therapy three times a week, (and a lot of hard work at home with Mom & Dad) he went from far behind his 'age-appropriate' level in every skill, to catching up to age-appropriate, to surpassing it (and a 6-800 word sign-language vocabulary that we all still use around the house even though he speaks fine now). And slowly, the autistic-like behavior decreased and finally disappeared.

In preparation for him being mainstreamed into regular kindergarten next year (!!!!!), we had the follow up evaluation done today by the Doctor that first diagnosed him with PDD-NOS. I was nervous as hell. About an hour and a half into him testing my son, he said he was going to put away the pre-school level stuff and move on to Kindergarten level "just to see how far he can keep going". We then moved on to First grade stuff. Apparently he blew away the pre-school level test and the Doctor couldn't believe it.

When it was all done, he sat back with a big smile and said, 'Now I still have to actually score the thing, but honestly... I can't imagine there's any way I'm going to be able to give your son a diagnosis of any kind.' Just what we wanted to hear. He added, 'Other than damn bright, and very advanced for his age'.
:rocker:

So anyway, I officially have a 'normal' son, and he'll be starting normal kindergarten next year, and will graduate from his developmental pre-school in a couple of weeks (they do little caps and gowns and the works!). It's been five tough years with this kiddo, and I tell you what, I've got all the respect in the world for parents of 'challenging' or 'special-needs' kids or whatever you want to call them. I know I'm damn lucky that mine was only temporary.

Sorry for the self-indulgent novella that had nothing to do with Ty Law. I'm just the happiest guy in the world right now and wanted to share with my Patsfans family.

TShirt, I am very glad you shared that with us!! Great, great, great story, and I'm very happy for you and your family! I have done alot with the Special Olympics over the years, have a Downes Syndrome brother, who is a total and complete blessing.

We have been very blessed with my 15 month old daughter, and are thankful for that, although would have accepted whatever God chose to give us.

I love how you went to the mat for this child, and did all you could do. You were challenged, and the happy ending is very heart warming.

I was driving into work this morning and heard that 1 in 116 children are diagnosed with Autism, and could not believe the odds were so high.

In any event, all my best to you and your family. Wonderful post.
 
Glad to hear that there was such a good outcome to this story!

Just out of curiosity, did you follow up with your state health department about the newborn hearing screening?
 
Thank you for a wonderful story, it brightened my day!!! The info on the Chiropractor was extremely interesting and hopefully word of mouth will aid others who might not think to explore this possibility.
My second child is a thriving 16yr old son, who was "failure to thrive" at birth, misdiagnosed a few times, had open heart surgery at 8mos, and participated in early intervention, I can attest to the trials and tribulations that are involved in with the medical field and infants. Often times the doctors are too quick with a diagnosis for these little patients who are still developing and can't communicate. We went through the hell of a diagnosis of cerebral dysfunction, blind and deaf from a noted neurologist, when it turned out that my son was not responding to tests because he wasn't getting nourished properly (had reflux and a bad heart valve) and had just "tuned out" on all those tests! One thing I learned is there's no substitute for parental instincts and knowledge, and bless the doctors that have learned to listen to them! Congrats to you and your wife T!!! Here's to many less stressful years ahead!!!
 
Good to hear T-shirt! Glad that everything turned out ok.

I have a 20 month old son who was born with a cleft lip and palate. He spent the first 10 months of his life going through 3 operations, one which took over 10 hours!!!!! And while in recovery of that long operation the doctors thought he stopped breathing. About 10 doctors and nurses came rushing in out of nowhere with a crash cart, all the while me and my wife we standing right next to him. Luckily, he was fine, his breathing and heart rate just slowed down a lot due to the amount of pain killers/morphine he had in his system. I have never felt so helpless in my life then when he was put through those operations. Kids that young can't understand why they are in and out of hospitals and why they are always being checked out, tested, etc. The only thing you can do is to be there for them and comfort them in any way possible.

It's been a about a year since his last surgury, and the doctors who performed them are true miracle workers. If you didn't know before hand, you couldn't tell that he had the cleft. I, like you T-shirt, know how great of a feeling it is when the doctors tell you your child is all better and your realize that he can start living a normal lfe with no more hospital visits and stuff like that. With a cleft there can be several developmental issues, speech, hearing and eating. But my son sees a person twice a month and they monitor his development, and they tell us that he is on par, if not ahead of most kids his age. Again, what a tremendous feeling it is hear something like that. Especially after you hear all of the bad things that can come out of a certain illness and/or birth defect.

It really makes you thankful when all is said and done that things turn out ok. Me, my wife and my son have gone in to Childrens Hospital more times then I care to remember since he was born. It is truely heart breaking to see some of the kids in there. No child sould have to go through stuff like that.

Anyway, enough of my story. Good luck in the future T-shirt.

ps - I agree with you on the ear tubes. My son has then in now, and he will probably need a couple more sets n the future.
 
Last edited:
Thanks again everybody!

Stevedogc, just to clarify, I'm not totally anti-tube. In my kid's case, he never had ear infections, the ENT never asked about an ear infection history, he just took the timpanigrams, wrote a pre-surgery prescription and said we'll schedule the operation soon. I was standing there like... Hi, nice to meet you, how about shaking my hand before cutting into my kid, or at least ask some damn questions. That was just absurd.

On the way out I passed the line of almost 20 people in for their weekly alergy shots or something. This guy was just running a human processing plant.
 
Last edited by a moderator:
Very glad to see that things have worked out for your little guy! It is amazing that the chiropractor was able to clear all of the hearing problems.

It'll be strange not seeing you at the 'Special Needs' parent meetings, though
 
Bostonian1962 said:
I have done alot with the Special Olympics over the years, have a Downes Syndrome brother, who is a total and complete blessing...

B1962, my youngest son (until kid #4/son #3 is born in mid-July), the little guy in my avatar, has Down syndrome. Although it's very early in the journey since he's only 3 1/2, he has completely put our life into perspective and made us drastically better people.
 
CTPatsFan said:
B1962, my youngest son (until kid #4/son #3 is born in mid-July), the little guy in my avatar, has Down syndrome. Although it's very early in the journey since he's only 3 1/2, he has completely put our life into perspective and made us drastically better people.

Beautiful kid, CT. Judging by that great smile, and what you've written about him here in the past, I can see he's put lots of joy in your lives.
 
Last edited:
CTPatsFan said:
B1962, my youngest son (until kid #4/son #3 is born in mid-July), the little guy in my avatar, has Down syndrome. Although it's very early in the journey since he's only 3 1/2, he has completely put our life into perspective and made us drastically better people.

CTPats,

Downs children are just so full of love all the time. They just want to please others. I have several friends that also have Downs children, and when I told them what a blessing it was, they thought I was just trying to make them feel better. Now they know I was being honest.

My best friend has a Downs child. What a beautiful, happy little boy.

My brother is in his 30's now, and I have 4 other brothers and 2 sisters that all say the same thing. "Thank God for Matt". Life would not have been complete without him. He called the other day just to wish my wife Happy Mother's Day! He's my daughter's God Father. You want to talk about completely and totally happy when I asked him. What a reaction! He's so proud!!!

I could go on and on. I appreciate your post very much. Thank you.

I tell everybody that has a handicapped child - spoil them with love. treat them like any other sibling, joke with them, have fun with them, include them, and the return on that love is 1000 fold. My brother gives us crap in a joking way just like we do to him. He has a great sense of humor. His success in the Special Olympics is legendary.

O.K., I'm stopping now. Thanks again.
 
CTPatsFan said:
B1962, my youngest son (until kid #4/son #3 is born in mid-July), the little guy in my avatar, has Down syndrome. Although it's very early in the journey since he's only 3 1/2, he has completely put our life into perspective and made us drastically better people.

Hey, that is a cute looking kid. I noticed your avatar before but I thought that you wanted us to think it was you as a child.

Many of us can feel extremely grateful that our children resemble our wives rather than us.:singing:
 
Congrats!!

Your son is lucky to have such perservering (sp?) parents!!
 
T-ShirtDynasty said:
Sorry for the self-indulgent novella that had nothing to do with Ty Law. I'm just the happiest guy in the world right now and wanted to share with my Patsfans family.

No apology necessary; you have every right to be ecstatic. :rocker:
 
Great, great stuff, Shirt!

Another much-maligned profession is naturopathic medicine. After taking our daughter to MD's who had absolutely no clue what to do for a chronic skin rash other than rub steroid creams on it, we found a naturopath who quickly diagnosed food allergies, and helped us figure out which foods to cut out. Our daughter's been clear (and medicine-free) ever since!

As I understand it, MD's typically get zero training in nutrition, even the dermatologists who are likely to see cases like this. Hopefully med schools are evolving....
 
Status
Not open for further replies.
MORSE: Patriots Mock Draft 6 – A Week Before the Draft
TRANSCRIPT: Eliot Wolf Pre-Draft Press Conference 4/13
Patriots News 04-12, What To Watch For In The NFL Draft
MORSE: Pre-Draft Patriots News and Notes
MORSE: Patriots Mock Draft 5
MORSE: Patriots Mock Draft 5
Mark Morse
2 weeks ago
Patriots Part Ways with Another Linebacker as Offseason Roster Shake-Up Continues
Patriots News 04-05, Mock Draft 2.0, Patriots Look For OL Depth
MORSE: 18 Game Schedule and Other Patriots Notes
TRANSCRIPT: Mike Vrabel Press Conference at the League Meetings 3/31
MORSE: Smokescreens and Misinformation Leading Up to Patriots Draft
Back
Top