Questionfor Parents That Have a Child with a Disability

Dear D.-

I have a daughter who is medically challenged and has severe developmental delays. Her twin is medically fine now (they were premees at 29 weeks three days...not that I was counting) and 'typical' (I HATE that word 'normal').

Anyway, they are 14 years old now...and for Shannon, who has been 'expected' to die since birth (the doctors said she was 'incompatible with life' as I recollect) that is 13 years and 364 days longer we have been blessed to have her in our lives.

I knew in utero that shannon had issues. In fact the docs wanted me to abort shannon for the sake of the 'good' twin...LOL...as if shannon was 'bad' by nature of her heart issues. Anyway, while on bedrest in the hospital for last weeks of pregnancy, I had plenty of time to read. One article that I found helpful (and I cannot remember the title of the author - sorry) described how having a child with special challenges is like spending MONTHS planning for a wonderful trip to france. You plan...save...pack your bags for the trip. You are looking forward to the museums there...the fine food...the wine...the eiffel tower. You are excited beyond measure. Then, on the plane, the flight plan changes. You find you have been diverted to Holland! You are PISSED!! You had planned on france forever!! BUT...once you land, you find that Holland is nice too! They have windmills, beautiful countryside...TULIPS! And, delft china! (lol - *my editorial addition*). Anyway, after a while, you really fall in LOVE with holland.

That is how I see and live my journey with shannon. I named her in utero...it means 'gift from god'...and TRULY that is what she is. She has six siblings...and ALL were here yesterday. The oldest three who have been away at college...were SO glad to see shannon...and she them. Developmentally, she is perhaps for or 5...with the hormones of a teen...if you can imagine! lol

She can speak some...and we are back and forth with sign...receptive language is good...expressive is so hard to understand. Her heart issues are as resolved as they can be so far...she has some chronic issues...and no emergent ones in a year or so....

Anyway...I stopped looking for shannon to 'conform' to 'normal' a LONG time ago. While we strive for her to be as 'typical' as she can be...she is MY gift. She teaches me patience, tolerance, humility, compassion, kindness and generally all about the 'gift' of life!

Beyond that, I was reminded with all of the kids home for christmas...she has given them those same gifts JUST by being her! My second youngest child (megan was born 2 minutes later) has helped mold her siblings into the kind of people they ARE...and that has TRULY been a gift.

My answer has been long I know...but I am hoping I can offer a different view on the gift YOU have been given.

Treasure your gift

All the best
michele/cat

I'm Deaf, and my daughter is Deaf also. I'm also currently in college majoring in Deaf Education/Elementary Education. Does your son have hearing aids? They may be beneficial to him. I wear them, even though I have a profound hearing loss, and I can hear and speak so well people think I can hear, just with a slight speech problem.

Try a flashlight, or remind the other child(ren) that because it's harder for him to hear, there has to be some changes to make sure that he stays safe. The flashlight, especially a bright one, will work in most situations.

And sign language will reduce SO much frustration for you both. You really have no idea. I realize that as a mother, you want him to be able to be "normal"... but since you have so much frustration, it may be wise to try sign language *in addition* to speech. Use them both, together, and you will find your son able to communicate better than before.

http://4.bp.blogspot.com/_M-BAtuQ2cic/S_oBHcumIDI/AAAAAAA...

The above link will show you an audiogram (ignore the squiggly lines). This one is nice because it shows the ranges for hearing loss. What it doesn't show, however, is this:

http://1.bp.blogspot.com/_a4dLStc66XE/SViAoqls18I/AAAAAAA...

That yellow area is called the speech banana. Compare this to the other one - what parts falls outside of your son's hearing range (the top part) is what he can't hear. Since he can't hear your tone of voice, it may be possible that he's losing more of his hearing.

Contact me if you want - I'll be more than happy to explain more and give more suggestions for other resources. My own parents (hearing) tried to have me to speak only - and I rebelled so much they finally caved and added sign language. I'm just *fine* now, and I'm watching with delight my own daughter signing new words spontaneously. :)

D.,
It is a process. Don't be hard on yourself while you are transitioning. You will get better, but you are human after all!

You will learn new techniques that work for you. A gentle tug on the "leash," a tap on the shoulder or you will just learn to get up and walk over to your son and gently turn his head to face you. It's okay if you mess up and yell once in awhile. We all do it and then hear that voice in our heads...... "that never works. why am I yelling?"

Be patient with your boy and yourself. Keep yourself educated and read what you can. Take tips that feel right to you.

:)

IMHO... you already are. :)

It's that "shake yourself" moment you just had... when your brain STARTS to adjust to the fact that things are different. In 6mo, you won't even see the sense in the knee jerk response you had today with the holler/discipline, because it won't be a reaction. You'll have a whole new set of tools that work, and THOSE will be your "go to" / "knee jerk reaction". ((And you'll be no end frustrated with people who just keep yelling at your child who can't hear them, because of COURSE he's not being defiant/disrespectful... he can't HEAR them. Should their kid be punished because you whispered something a block away and THEY didn't hear? Not hearing doesn't equal disrespect, it means not hearing ;)).

I don't know what your new go-to's are going to be. I've never worked with deaf or hard of hearing kids. HAVE worked with lots of adhd & gifted & aspie kids. There's just a gear change that happens between those 2 or 3 groups and "typical" kids. Gear a for the adhd kids, gear b for the aspie kids, gear c for the typical kids. A lot like learning to drive a stick... there's some grinding between gears when I'm learning. And then I look around one day and I'm moving fluidly between gears without even having to think about it. Much less the grinding/ choking/ stalling that would happen in the beginning.

But, for me at least, it's TRYING to shift gears that teaches me how to do it. Even when I'm grinding them.

You know he can't hear so stop talking to the back of his head. Make sure he is looking at you when you talk. No need to get upset just walk in front of him and make sure he is looking at you.

EDIT: I did read your question. I think you should do something to get his attention, get in front of him, I agree with the poster that said a gentle tug on his leash, tap on his shoulder. I simply ment stop doing what isn't working.

I have a child who has Autism, and pretty bad ADHD. My oldest has ADHD too and is being tested for Autism and a learning disability. if what you are doing doesn't work stop doing it and try something else. I NEVER said it was easy!!! To be clear I don't think working with a child who has ANY type of disability is easy. I am dealing with Autism and you are dealing with a hearing loss. They are different sure you just have to learn to keep trying something else but keep doing what works.

LOL You really want to trade? I will take hearing disability for Autism any day. I wish I could trade ya.

D.,
what kind of hearing loss does he have? Is there a chance for surgery to reverse it?
If not, have you started the procedure to have him fitted for hearing aid? What about speech?
We deal with the same thing. And it's hard not to get frustrated. I guess frustrated is the wrong word, more like, angry at why it happened, and it takes my whole being to not project that anger at the wrong place. I am 1000 times more patient with my daughter than with anyone on this planet. She gets my 100 per cent. It is not her fault. I also provide her with all the assistance she may or may not even need. Try. It takes every day but just try. Keep reminding yourself without your help he cannot do it.
Good luck

how about you find a support group with others like you? also have you looked into learning some signs so taht you can discipline him without having to get loud? good luck

My son had hearing loss when he was younger. Have you gotten him hearing aids yet? When children have a hearing disability it goes over to there other "abilities" including potty training, social, and fine/gross motor skills. Talk to your Dr. about some kind of way to help with his hearing.

You are only human. We go through grief, and anger, and finally, forgivness. You will not be perfect, and you should not expect to be.

Everyone does not get the same thing, and that is fair if everyone gets what they need. Fair does not equal identical, far, far from it. Even if your older son would have been punished, if you know it will not help to punish your little one, it is fair to let it go and do something that will work. When the moment has passed, let it go, and plan to act differently the next time, so that what you do has effect. Even though he is not typical, he is more like typical kids than he is unlike them, and at his age, he is in the here and now, so once the moment has gone, let it go. Don't beat yourself up about it, you will have another opportunity to do better...and next time, you will have a plan, experience, and can rejoice in a small success. The road is long, but you will get there.

M.

Go Cowboys!

You are recognizing the issue! That's the first step in acceptance and understanding what needs to be done to teach your child and keep him safe. Your anger is a form of grief. The precious son you gave birth to isn't perfect. Grief in parents of disabled children can be short or never surmounted and a parent might spend years looking for the perfect treatment, setting or teacher to make them 'normal.' I see your irritation, anger, puzzlement as a healthy reaction, your honestly a good step toward coping. Over time, you and he will develop many ways for communication, such as physical cueing. A light tap on the shoulder, a hand cupping the shoulder or ribs, or turning him to face you so, you can let him see you giving him directions, are good starts toward developing cueing processes between him, you, and others. He will develop more in school.

[hugs] It isn't easy, but you are moving forward! Take care.