Meet others parenting handicapped child

[paulad]

Would love to talk with other catholic parents of handicapped children. Advise is always needed and some of my friends are really hard to talk to. Unless you live with someone that is mentally handicapped its hard to understand.

 

[paulad]

Would love to talk with other catholic parents of handicapped children. Advise is always needed and some of my friends are really hard to talk to. Unless you live with someone that is mentally handicapped its hard to understand.

 

[OSUbride0708]

Please don’t take this as offensive at all, as I am just trying to help. Nowadays, the term “handicapped” is kind of an archaic term. People who may have some kind of disability often don’t like to be referred to as “handicapped”.
Also, here is something helpful that one of my teachers shared with us, it’s about person first language. Person first language involves putting the person first, and not defining them by their disability. It may not seem like it, but there is a big difference between saying “a disabled child” and saying “a child with a disability”, or “an autistic child” and “a child who has autism”. At first, it’s normal to think there’s no big difference but once you start putting it into practice you start noting the difference more, noticing when other people aren’t using PFL and making them aware of it.
This is a really good resource: asha.org/about/publications/journal-abstracts/submissions/person_first.htm
I was made aware of this 2 years ago and am still constantly working on it. As a parent of a child with a disability, you are going to have to be an advocate for your child and this can only help.

May I ask, what disability are you referring to? I may know of some resources.

 

[scanj05]

My family also does not like to use the word hanicap, But I do have a eight year old daugther with Celberal palsy, She wear braces and had a walker. It has been a challenge, I had her when I was only 19 years old, but she is the greatest I thank god every day for her. I have never meet someone that loves god as much as my little girl, she will be getting her first communion 5-4-08 which she is so looking forward to it.
I pray for all the families which children that may have challenges in there lives, they are though a true blessing.
God bless you all.

 

[Brenda_V]

paulad - what kind of mental disability are you talking about? I am the parent of a now deceased child who had partial trisomy-13 which caused many anomolies in her little body from no eyes to mostly blood vessels in her cranium. She lived 2 1/2 years and blessed us with her smile and laugh as well as trials and lack of sleep those 2.5 years.

What would you like to discuss?

Brenda V.

 

[Lil_M]

I’m not a parent (yet) but I do work with individuals with deafblindness, and would be interested in this discussion…

 

[ems3]

I have a 15yr. old daughter who has quadriplegic cerebral palsy and severe/profound mental retardation. She requires total care and I am thankful that we can care for her at home. I do worry about the future though, as far as being able to always care for her. I will be 50 this year and am still strong and healthy. Hopefully my body can hold up so that I can always care for dd. I love her so much and am blessed to be her mom and have my health.

 

[Brenda_V]

I have a 15yr. old daughter who has quadriplegic cerebral palsy and severe/profound mental retardation. She requires total care and I am thankful that we can care for her at home. I do worry about the future though, as far as being able to always care for her. I will be 50 this year and am still strong and healthy. Hopefully my body can hold up so that I can always care for dd. I love her so much and am blessed to be her mom and have my health.

I will pray for your health to continue so you can continue to care for your daughter . Mine stopped growing when she was 1 year old so when she passed away she was the size of a 1 year old so in that we were blessed that had she lived longer she would never have grown so big as to be a problem for me or my husband to be able to hold and care for her needs.

Still waiting for our OP to post . There are many of us here on the CAF who would love to talk with you about your child and your own personal needs as our children who are profoundly handicapped can indeed drain us both physically and emotionally.

I did respite for families of children with handicaps so they could have a day or weekend or more free to recharge and come back to be a better parent, advocate and care giver.

Brenda V.

 

[shannyk]

Hi Paulad

I have an 8 year old son with severe autism and severe mental retardation, and two other children, each have their own challenges.

You are right about talking to friends; for me it’s near impossible but that’s OK because I am too busy for the silliness most of them are interested in (partying, gossiping etc.) Some people miss the ‘friends’ aspect of life they had before kids though, so it can be a difficult adjustment.

What do you wish to discuss with us?

 

[ems3]

Brenda V., thank you for your prayers! Your little sweet one must have been so precious and I bet you still miss her so much. I do wish my dd would not have grown quite so large as I miss being able to hold her on my lap and snuggle and comfort her that way. She is nearly as big as me, but still really a baby in many ways.

Often it is very difficult and exhausting caring for her but I am thankful for every day that we are blessed with her.

Paulad, are you still here? Would you like to share about your child?

 

[Truly_Blessed]

Hi y’all,

I would encourage everyone to visit an awesome new website. It’s www.prenatalpartnersforlife.com. Their mission is to connect prolife families who have disabled children (or those who have lost a child) with couples who have just received an adverse diagnosis for their unborn child. For example, a couple with a Trisomy 13 child could help a couple who was just told their unborn baby could have Trisomy 13. The outside pressure to abort children like these is tremendous in most cases. This group provides prolife, compassionate suppport.

Have a holy Good Friday!

 

[Brenda_V]

Hey friends, I just checked to see what else our OP had posted. There is a post in “prayers” here:
forums.catholic-questions.org/showthread.php?t=226964

She (Paula) asks for prayers for her son who has Downs Syndrome. Now we know what disability she is talking about and most likely why she hasn’t been back here to talk to us .

Those of us who have/had children who are/were fragile know that sometimes we have only energy to focus on caring for our child. Let’s pray for her and try to keep this thread at the top of “Parenting” for awhile by bumping it so she can find it when she has the time to come back here - she only has 3 posts so she is very new here, so Paula if you finally have found the time to read this :tiphat: welcome to the CAF (Catholic Answers Forums).

Brenda V.

p.s. Thank you pp for the link. One day when I am personally not feeling so down I will sign up to be a support person. You are right, I miss my Rachel even though it has been some 24 years since she went to Heaven - we did not know prior to her birth that she would have a problem, Ultra-sounds were not routine 26 years ago and we had no other reason to assume she would be anything but normal).