My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Monday, November 2, 2009

Special Needs Children Require Special Parents

A message from Joyce: Several weeks ago, August 21st to be exact, I wrote about a relative that was unhappy with a blogpost I had written and she called to let me know. That day, I felt many emotions. Mostly anger. But as time went on my anger turned to hurt. What the caller was really telling me is my feelings aren't important. What I was revealing in the original post was how I felt on a certain day. Shortly after Sarah's birth. I was trying to help my readers understand that those first few days, even weeks and months are hard. Very hard. And a whirl of emotions is involved. Yet, life has a way of working out. And twenty years later, life can be beautiful if you let it.

A week or so ago my husband had another conversation with her and again she questioned why I needed to write about what I did. Why did I even need to write about twenty years ago, she wanted to know? The short answer is because I felt like it. Not to mention this is my blog, my and Sarah's blog and we can write about anything we want to. But I don't usually take the short route. My mojo is to take the longer road. To delve into the situation and look for the good that can come out of it. What was the real issue here?

Then last Thursday when I sat down to read the newspaper, this was the headline to the Dear Abby column, " SPECIAL NEEDS CHILDREN REQUIRE SPECIAL PARENTS" Although I might not totally agree with the wording of the heading, the letters that day were directed at an Aunt who had written to Abby complaining about her sister who has a child with Autism and not liking her lack of help in a project the Aunt thought she should be involved in. I remember reading that. It wasn't too much before my dreaded phone call. I'm sure the writer thought that Abby was going to agree with her and say, "Yea, your right. Instead she told the Aunt that she needed to cut her sister some slack as parenting a child with special needs is not easy. "

As I read through these letters I really started to think about this relative. I realized that I could not recall one single time that she ever came to the hospital to see Sarah. In all fairness to her, she lived in another part of Ohio. But still. Sarah spent the better part of her first ten years of life in the hospital. One year alone over 100 days. Am I looking for sympathy? Pity even. Goodness no. Just a request for a glimpse, possibly an understanding that life has not been easy for us. Why be so critical and judgemental? The common thread in the following letters: try walking a mile in our shoes. I would settle for just reading the letters.

DEAR ABBY: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fundraising with her and the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack. Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center around our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc. The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do. -- SPECIAL-NEEDS MOM IN ALABAMA

DEAR ABBY: I am the mother of two boys with special needs who are around his age, and I can assure you, that woman is already "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need. Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box). The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry, and a long, comforting hug. -- CINDY IN AUSTIN, TEXAS

DEAR ABBY: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly you're sobbing again. Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, many of these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit. There is also the problem of not being able to get needed services. In many states, once children are out of the school system and on the waiting list for adult services, they sit and languish at home with NO services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you must relocate, you go to the bottom of that state's waiting list. Living with that, we often can't get or hold jobs. Day care is a huge problem for us and our kids. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research. -- SONJA IN COLORADO

Dear Abby is written by Abigail Van Buren, also known as Jeanne Phillips, and was founded by her mother, Pauline Phillips. Write Dear Abby at or P.O. Box 69440, Los Angeles, CA 90069.


Shelley said...

I don't really know what to say but wanted to send a sympathetic smile your way. I think I understand your position. I also have to say that I prefer my family not to read my blog - just in case inadvertantly in a fit of honesty I write something that offends or upsets them. I try to be fair in what I include and respect privacy of those besides myself. It is a tricky one cos how else are we to process some of our experiences - and others in similar situations often really appreciate sharing experiences -- especially those like yours and Sarah's - who are so much further on this journey than families like mine!

Heather said...

Not even enough writing space available for me to give you my take on people,especially family members,who just DO NOT GET IT!!And "IT"encompasses a multitude of complex layers and levels. If I got started now .. I may not stop and Lord knows,no body wants to be privy to that!!

Thanks for the post Joyce.As always.

Karen said...

Thank you for sharing that. Of course I agree with the letter writers. It's not something that we complain about, we just do it because it needs to be done. I think maybe that's the reason that so many people have no clue what goes into the day-to-day of our lives.

Have I ever mentioned that you're my hero? I really look to you for guidance. You've done such a tremendous job with Sarah.

Stephanie said...

I once made a post about a family issue regarding Aiden and Down syndrome. There are some members of the family who do not accept Aiden due to him having Down syndrome. However, the other party of the story read the blog and got offended. I had to remove the post, and my feelings of the situation were never to be acknowledged.

datri said...

I sort of had mixed feelings about the responses to that column. I agree that the aunt was totally clueless, but I cringed at the thought that people would think from these letters that we have such horrible, miserable lives that completely revolve around our kids to the exclusion of anything else. I don't want pity, I want understanding.

stephanie said...

As always Joyce you don't beat around the bush, you get to the point. I love your posts. I love that you take the time to go back, include details cover all the bases. Your posts are not only informative but compassionate. I look to you to see what is coming in my life with Em. If I have ever have a question it's you I would ask for the answer or advise.
If your relative is still having issues then they really need to move on. Get over it and fast!

Sarah is a beautiful young lady and an incredible role model. I wonder why? Could it be because of you and your husband. Doesn't this "relative " see any of that? She should be lifting you up instead of trying to pull you down.
I hope you always write about what's on your mind. No matter what. You are helping people who need reassurance and direction maybe just a comfort. You've been there and done that with Sarah. I think it's wonderful that both you and Sarah continue to blog and be active supporters to us all.

Scarehaircare said...

I admit there are days when I feel just like this (you commented about the last post I did on that subject). But there are also days when I feel like I am blessed beyond measure for having The Love Magnet in my life - she has changed my family in so many positive ways. There are also days when I feel I'm on top of the world: when The Love Magnet masters a new skill or the doctors declare her healthy at a particular visit. There are also days when I (or my kids) feel that I am not giving enough attention to my other children....then I feel like the worst mother in the world.

This whole journey will be an endless rollercoaster. Those family and friends who have helped me the most have brought meals, did a chore at my house, took one of my boys with their families for something fun or took care of my daughter so I could focus on one more more of my boys for few hours. There have been people willing to listen, knowing that I just needed to vent. And there are those people who give me a hug or kudos for doing this job called motherhood. God bless those people. God made them His angels when I needed them.

Anonymous said...

My husband has two sisters who never called to talk to us about Gabe's heart surgery, nor did they send a card. One of these sisters, never acknowledges Gabriel's birthday -- ever.

The other sister, although sent birthday cards, never sent any acknowledgement to photos I emailed for the first six months. So I stopped. I no longer speak with this particular sister-in-law after a falling out we had over a phrase she used when her daughter started high school. She said, "I hope there are no slow kids in Kelsey's class."

There are lots of details that I won't go into, but it is this same sister who refuses to acknowledge how difficult it was for me and my husband during Gabe's first 18 months or so. From what I'm told, she argues that it couldn't have been so bad, and besides there were two parents. She begrudges us because she was a single parent for a time.

I guess what I am trying to say is that just because someone might be related by blood, it doesn't mean he or she is capable of understanding. I like to think of these people who go through life with their heads buried in the sand. They're not worth the worry.

Mary said...

Great post! Love the article!

Kristen's mom said...

You are my hero also! Kristen has been very sick many times...What really makes my blood boil is when extended family members say "Oh wouldn't it be best if she did just pass on." Are you kidding me? In what way would that be better??? Better for them, cause it surely wouldn't be better for me. What do they think, that we couldn't possibly love them because they have a handicap? I better stop now. Thank you to you and sarah for all your inspiration.

Anonymous said...

Perfect. Thanks for sharing.