Tuesday, October 9, 2012

Dear Alyssa

Dear Readers,

Awhile ago I received a comment on a post I wrote about Samantha Brick, a British actress (I think?) who claimed she would abort for Down syndrome. She has no children and has been undergoing fertility treatments for years in the hopes of creating a child. But not just any child- she needs one that measures up to her standards. Her statements were carefully worded to sound genuinely concerned for the safety and well being of a future child. She spoke to the "fact" that she wouldn't be able to care for a child with Down syndrome, as she had no immediate or even extended family to leave her child with, should something happen to her and her husband.

I've heard this argument before, and to me this kind of reasoning leads to one conclusion: if you feel that strongly about the well being of a future child, that you cannot foresee any possible solution should something happen to you or your spouse-

Don't have children.

Because none of us are guaranteed our children will remain "self sufficient" as they turn into adults.

I have a relative who arrived in life with the correct amount of chromosomes, according to Samantha Brick. By all accounts this little boy was going to go very far in life. He had wealthy, educated, loving parents, and he was a perfectly healthy little boy. He crossed the street behind a school bus one day after school, and an oncoming car never saw him. He spent the rest of his life unable to walk, talk, feed himself, or move his limbs. He was eight years old at the time of his accident.

So my question is- what do you do when life hands you something you have no control over? Where do we draw the line when it comes to "quality of life"?

But let's say Samantha Brick gave birth to a completely "healthy" child, one with no defects, according to her standards...and something did happen to Samantha and her husband. Her argument was that she had no family who could care for a child with special needs, nobody close enough to her who would rise to that challenge.

I'm assuming she has friends somewhere who would care for a healthy child?

Maybe she needs to surround herself with a new set of friends. Maybe find some who are less shallow than she is.

So going back to the original comment on that post that sparked these thoughts...

BUT...how do you address the very real concerns about the lack of support system that many parents have in place? I doubt you can really understand the concerns as you are blessed with TEN wonderful children. There are people waiting in the wings to fight over who will support Lily when you and Sam depart the earth. We are not all so lucky, and Samantha Brick surely is not.
My son with DS is less than two, and an only child. My husband and I are only children, and all our son's grandparents are already 65 or older. This means that by the time he is graduating high school they will be 85 or home in heaven. What is your real-life solution answer to someone like me as I agonize over the decision of whom to entrust my child to? Beautiful photos of your two year old daughter aren't going to solve my problem, or Samantha Brick's. This is exactly what she means by "Disney-fying" the condition. It DOES come with practical concerns, particularly once our children are older, and all the Kelle Hamptons and Patti Rices of the world can't fix those practical concerns with pretty pictures on a blog.
If your answer is "provide in your will for a long term care home, a group home or an institution," my response is this: atrocities happen in these types of places every day. These institutions are teeming with people who will abuse our precious children. NINETY PERCENT of our children will experience sexual or physical abuse, and probably 100% will experience emotional or financial abuse, most at the hands of "caregivers." The only hope any of our children have of being safe and healthy in this type of environment is to have a lot of involvement and oversight from a support system like family. But if he only goes there after his dad and I go home to God...who will look after him and make sure he's not being abused and taken advantage of?
You're so blessed not to be kept up at night by these types of questions. But can you provide a REAL answer of substance to the concerns of others? 

My first thoughts about this question were...who would you entrust your child to if he didn't have Down syndrome?

But that question is purely a rhetorical one...and I do have some ideas that I believe are, as this reader stated, "real answers of substance to the concerns of others."

Before I share those ideas, I'd like to tell you about another real life situation...

My oldest son Jason is married to a beautiful young lady named Naomi....Naomi's oldest sister's name is Jennifer.

 Should Naomi's mom have undergone testing for Down syndrome or any other chromosomal defect during her pregnancy with Jen, she would have received a "clean bill of health" for her perfect little girl. Nobody could have predicted what happened during labor and delivery- Jen could not fit through the birth canal, and a negligent doctor did not require fetal monitoring during delivery. Jen suffered brain injury at birth, and as a result she has lived over 30 years with cerebral palsy. Jen lives semi-independently in a house next to her parent's house, but she will never be able to live completely on her own.

Years ago Denise (Jen's mom and one of my very best friends) formed a group called Circle of Friends. She has invited countless numbers of relatives and friends to Jen's home for these Circle of Friends parties. During these parties Denise talks about what happened to Jen at birth...she shows videos of Jen learning to walk as a child, going through physical therapy, and being featured on the news. She has scrapbooks filled with clippings of articles Jen appeared in, and dozens of photos of her childhood. The purpose of these parties is to link people's hearts with Jen- to give people a glimpse of the person behind the "label" of CP. She asks each group of friends to commit to spending time with Jen in the upcoming year...she has a calendar that people can schedule events on, whether that's taking Jen out to coffee, or coming over to play cards, or having her go spend an evening at their house.

Denise asks each person who is willing, to leave their phone number, and they're placed on a Circle of Friends phone list. Throughout the year Denise rotates Jen's Circle of (phone) Friends, and those friends receive phone calls from Jen for one week. We've been privileged to be on the receiving end of many phone calls from Jen- my kids love to take turns talking to her and asking her what she's been up to lately.

The purpose of Jen's Circle of Friends is to establish a network of people who care for her and tune into her and take time for her. Many people looking from the outside might have just seen a young woman with a walker and a childlike mentality... but once you've been to a Circle of Friends party, you see an amazing and accomplished individual who overcame everything the doctors said she wouldn't. You see a person behind the "disability" and you walk away wanting to make a difference in that person's life.

So my advice, Alyssa? Start now establishing relationships with people whom you want to care for your son. Invite them over, ask them to babysit, take them out to lunch and talk about how your baby is enriching your life. Cultivate relationships with people whom you want to take interest in your child, and if you haven't done so already, attend a support group for families of children with Down syndrome.  Find parents of children with special needs who can share their plans for the future as well.

You sound like you're a Christian. If so, I hope you belong to a community of believers - church is the number one source of long lasting relationships in Jen's life, and I know it will be the same for Lily. Purposely determine that you are going to surround yourself with people who will love your son. Start now, and don't be afraid to accept help from those who offer. Reach out. As much as Lily's siblings love her, we have a host of friends who would fight over her should something happen to me or my husband- and most of them are in our church.

Above all, pray that God will bring people into your life who will see the value and worth that you rightly see in your child. HE is faithful, and I do believe He will answer that prayer. I don't have every answer to every question, but I do believe that God is able to meet the desires of our hearts, and when we entrust Him with our children - with our lives - He will take care of us.

I wouldn't be raising ten children if I didn't believe that with all my heart.




Ruth R said...

Some great ideas! I would also add, some people like to provide a child with a godmother or godfather figure in their lives at a dedication or christening service. They could also be someone who undertakes to look after a child's welfare if they were orphaned. If they also had a child with special needs, coming to a reciprocal arrangement where both families undertake to look after the other child as well as their own should it become necessary, might provide additional peace of mind?

Education: Exploring Online Learning said...

I'm going to add a few things.
1) Set us a special needs trust. Is this more expensive than raising a typical child? Yes, a one-time cost of $1000. Over 18 years, hardly makes a difference. Fund that trust with your life insurance.
2) Learn about the GOOD group homes. I have a friend on FB who lives in one. If Ellie ever had to live in a group home, I'd call this guy and his parents and see if they had a spot for her.
3) Create your own opportunities. I know plenty of girls Ellie's age with Down syndrome who could share a house, with weekly check ins from each family/friend, they could be independent.... in 18 years :)

Naomi said...

Perfect post :)

ckbrylliant said...

Great advice! Dear Alyssa, I hope these words help and I will pray for you on your journey.

Lisa said...

Well said as usual! Where there is a will there is a way and everyone should have plans for their children in case of tragedy. Your ideas are great - I never thought of the circle of friend, that is a great idea.

Deanna said...

I love the circle of friends idea- so practical and smart! Thank you for addressing this comment. I know that it is a fear for most parents in this situation (and the one big "valid" reason given for abortion), but I agree with the no guarantee aspect of it all. I think we probably all know people that live this point out every day.

Becca said...

Excellent post. I received some private, negative backlash from voicing my opinions on that Samantha Brick story on Facebook. So disappointing when you find out how those you viewed as REAL friends actually view that situation and supported Ms. Brick. :-(

Kimberly said...

Excellent answer. Thank you for the great response :)

cathy said...

perfect, dear friend


crystalkupper said...

I love practical advice! Loved this post!

Mrs. K said...

Great response Patti. I pray Alyssa heeds your advice.

Mrs. K said...

Once again, I LOVE those pictures. The one of Abbi holding Lily is oh so precious.

Gretchen said...

This is really great advice for ALL parents, Patti. Thanks for taking the time to review your comments and thoughtfully respond.

Natasha said...

Samantha Brick is also the woman that said that women hate her as she is so beautiful. She lives in cloud cuckoo land and I have stopped reading anything she writes as its all rubbish and I am sure designed to elicit response. I am also British and therefore hoping that people dont think we are all alike. I am not surprised she wrote about aborting a Downs Syndrome child, I am sure karma will do its thing. I love your blog and your perfect Lily. I have a Lily too

Danielle said...

Well said :)

eliz said...

I'm sorry Alyssa, but I've run a 4 bed group home in my home for 25 years and have never abused or stolen from any of my precious clients in that entire time. I LOVE them as if they are my family members. And they do become my family members too. Their families share them with us. This is a blessing. Two of our women have lived with us 25 and 23 years. One lived with us 16 years before she died. Many have come and gone. We LOVED each one as if God had sent them to our family. Several have had difficult behaviors. Some have attacked us. We do not take this personally. We LOVE what we do. Families do abuse and take advantage of other family members with disabilities, we have seen it and reported it.
Please join ARC and other groups in your area and as Patti mentioned, find good people. We know many good people who do this work on a small scale like us, we don't get rich, we LOVE our work, we earn an honest living, and we LOVE our clients. You can see MA and SP on my blog.
Tomorrow our group home gals are having their picture taken with our family as we prepare for our 17th adoption. Yes we currently have many children of our own, birth and adopted with disabilities and I have no worries (Praise God) about their lives with or without me.
I hope I do not sound rude, I'm just stating the facts as briefly as I can. :o) (((HUGS)))

Wow! Patti, it's been years since we were in a beautiful Circle of Friends group!

Amy said...

It's been too long since I've read your blog... It's interesting that tonight I met a woman at the park who was very helpful and kind to all of my four children. She told me I had a beautiful family. We talked about our adoption of Dusty and Sonya - who both have Down Syndrome. This woman told me that when she was pregnant with her son the test results showed that the baby had DS. The doctors recommended to terminate the pregnancy. This couple said NO and prepared themselves by learning all about DS. The baby was born without DS. Abortion is wrong - always - wrong! I'm so glad that these parents were in the 7th percentile and gave life to their child -no matter what - with or without DS! Thanks for posting about the "circle of friends." Too many people think that a long life for a person with Down Syndrome is a burden not as the blessing that it is.

Happy Down Syndrome awareness month!

Danielle said...

P.S. You twisted my arm... I'll take Lily!!!!

I'm sure I won't have to fight Naomi, or Jason, Or Jo, or Mo, or Kenz...

Give her to me!!!!

cara said...

Just now seeing this! SO glad for this post Patti!

Wow, that Circle of Friends idea is such a great thing to do. And a mother that loves her child does that for her child.

Totally agree with you that God will provide for the needs of our children. He is GOOD!!

shayneswife said...

I am in total awe of your wisdom!

shayneswife said...

I am in total awe of your wisdom!