Tuesday, August 20, 2013

When Our Special Needs Children are Rejected

Karla Begley, of Newcastle, Ontario, wept as she read portions of the hate mail to local news. She is the  mother of 13-year-old Max, who was diagnosed with severe autism at the age of two.
Christina at the Mystic Aquarium autism day.
Watch her break down in tears trying to read the letter to a news crew in this video. 

The following is from Life Site News:
“I also live in this neighborhood and have a problem,” the writer stated in the one page letter that was received on Friday. “You selfishly put your kid outside everyday and let him be a [sic] nothing but a nuisance and a problem to everyone else with that noise polluting whaling [sic] he constantly makes!!!”
“That noise he makes when he is outside is DREADFUL!!!!!!!!!! It scares the hell out of my normal children!!!!!!!” it says.
“When you feel your idiot kid needs fresh air, take him to our park you dope,” the letter reads.
Calling the boy a “hinderance to everyone” the letter writer states that “no employer will hire him, no normal girl is going to marry/love him and you are not going to live forever”.
“Personally, they should take whatever non retarded body parts he possesses and donate them to science," the letter said. "What the hell else good is he to anyone!!!”
“You had a retarded kid, deal with it…properly!!!!! What right do you have to do this to hard working people!!!!!!! I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!!”
The letter ends by asking the mother to move or have her child terminated.
“Do everyone in our community huge a [sic] favor and MOVE!!!!”
“Go live in a trailer in the woods or something with your wild animal kid!!! Nobody wants you living here and they don’t have the guts to tell you!!!!!”
"Do the right thing and move or euthanize him!!! Either way, we are ALL better off!!!”
The letter is signed: “One pissed off mother”.
Max’s father said he was scared for his son’s safety. “A person who is that crazy or demented who would fabricate something like that leads me to believe that they are very dangerous.”
Neighbors say they will discover the identity of the person behind the letter. The family is open to pressing charges. 

Those of us who are raising special needs children who can sometimes have irritating habits find this sort of news terrifying. My eleven-year-old daughter with Down syndrome sometimes makes odd, loud noises. She frequently behaves inappropriately in public places.  It chills me to think there might be people in my town who think about her like this. Just this summer, I gave a talk in our small town's library about Christina, whose story is told in my book, A Special Mother is Born. I explained that sometimes Christina does unexpected things, like using the employee bathroom in the local pharmacy, but that with the right attitude, these mishaps become opportunities to meet my neighbors. I am now friends with the pharmacy's understanding manager, who laughed at the incident.

But as the letter makes clear, not all of us are lucky enough to find such kindness in our community. We live in a culture of death where inconvenient,differently-abled, noisy children are aborted before they become 'problems' to our neighbors. Autism can't be prenatally diagnosed yet,but the angry mom sees no problem with euthanasia. Its the same mentality. Kill the child who is inconvenient. Don't learn to live with them, or teach your children to accept differences. Don't grow in tolerance and acceptance like the parents who contributed stories of raising their special needs children to my book.

That's why the worst question you can ask the mother of a child like mine, who could have been prenatally diagnosed and aborted their baby is, "Did you know?" the hidden question behind this is, "Didn't you have testing to see that she had Down syndrome?" The implication is, "And you STILL gave birth to that nuisance?" Since when does a mother have to justify her child's existence to absolute strangers? Since we have a 'choice' about whether they live or die. We become responsible for bringing inferior children to the community. We have a duty to weed out "life unworthy of life", according to the culture of death.
 It is a possibility that this angry, bitter woman suffers post abortion syndrome. Maybe she aborted a child with a disability and this boy reminds her of her pain every day. 

Eleven years ago, I took my newborn daughter with Down syndrome to the softball field to watch her sisters' games and received a less than warm welcome.  We never went back again and my ball playing daughters were never invited to play in the league again. Seven years later I was told that the reason my newborn wasn't welcome is because a mom who had just aborted a child with Down syndrome saw her as a painful reminder of her tragic 'choice' to kill her child. She was related to the girls' coach. My family was eliminated from the sports community in order to make this woman suffer less. 

Our special needs children are what Blessed John Paul called "signs of contradiction" in the culture of death and we can expect some hostility. In that way they are participating in the Cross of Christ, helping mothers like the one who wrote the awful letter, and the one who banished us from the softball field, learn to love.

Read the entire article at Life Site News.

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Tuesday, August 6, 2013

Would Christina Choose not to have Down syndrome if she could?

Mary Keily has written a very thoughtful article about her daughter with Down syndrome and the new advance which shuts off the third copy of the 21st chromosome. She says. . .

Would Christina choose to have Down syndrome? I very much doubt it. Sometimes when our family is gathered around the table joking about one thing or another, Christina will turn to one of us and say sadly, “What are you guys laughing about?” In those moments my heart seizes. I wonder what fences she feels herself to be standing just outside.
And some of the losses Christina doesn’t even know about yet. For example, I haven’t had the heart to tell her that her dream of being a mom is one that will not come to pass, given her current level of capability. Our oldest child, 19-year-old Bridget, says that if she has babies someday, she will share them with Christina. It’s a beautiful impulse, but adult life can get complicated. Time will tell.
When I was pregnant with Christina, my husband and I were told, on the basis of my triple screen prenatal blood testing, that she was at high risk of having Down syndrome. We decided to bring her into the world anyway, feeling we were not wise enough, could not ever be wise enough, to assign a value to her life. I have never regretted that decision. Christina has been and is deeply loved.
But I also have no doubt that I would treat her Down syndrome if I could.
Read the entire article here.

We have a lot in common; my eleven year old daughter is named Christina and she has Down syndrome and possibly autism as well. We are still seeking our third psychological evaluation to determine if the loss of speech and cognitive abilities she experienced in  elementary school was due to autism. No one seems to understand why she can't speak anymore and has never learned to read more than a few words in seven years of school.
I agree that she would not choose to have Down syndrome if she could, she is isolated from the family not by our choice, but her lack of language makes some activities impossible for her to participate in, and we feel terribly guilty. Then she gets frustrated and throws something (I don't blame her) and goes off again to watch a movie alone.
 My heart breaks for her loneliness. She has no friends, despite our best efforts,her lack of language makes it very difficult to play with her and only the rare child has the patience and understanding. Most just walk away staring at her.
  Although she has made us better people, teaching us the same lessons you mentioned; clarifying priorities, learning to look at the soul not the exterior, we see her despondent at times as she struggles against obstacles she can't understand.

 That's why I hate Down syndrome but love Christina.
Just like Dr Jerome Lejeune who discovered the third copy of the 21st chromosome and spent the rest of his life seeking to cure Down syndrome out of love for his patients. He said, "Hate the disease, love the patient, That is the practice of medicine."

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