I shall ever be known as the “Chore Lady” The name was given to me
by my son Derek when he was a little boy (now 29 years old). Having 6 kids meant that we had lots of chores to keep up the house.

With the youngest three still at home, everyone is expected to help. So this week April, Jacob and Sam, the stars of this blog, did lots of chores- just like every week.

• April is in charge of all of her own laundry, her room, setting the table, washing dishes, unloading the dishwasher, cleaning the bathroom, and much more.
• Jake is in charge of washing clothes and folding and putting them away
  in addition to doing most of the vacuuming in the house.
• Sam is in charge of the upstairs bathroom, emptying trash cans and helping take down the trash on trash day.
• Everyone helps wash the floors.
• This week the boys helped rake the leaves and put them in trash cans or the curb.

My point? Our kids with Down syndrome can and should be expected to help at home. We hold them to the same standards as our other kids in this area. I have given up perfection a long ago and am OK with the work the kids do. It may take longer but it gets done. This is inclusion in real life.

Some may ask, “Do your kids complain?” They complain almost the
entire time – so did my older kids, but guess what? You can complain all
you want but there will be no TV, computer, playing in the basement or
fill in the blank of what they like to do until the chores are done.
So I sit in the house with my floors washed, trash emptied, dishwasher
emptied, and clothes folded. Rooms are picked up and beds are made
and I am a happy camper. The kids are playing in the basement and
April is waiting to get on Facebook. The Chore Lady has to get off
the computer. Susan

So we didn’t make 31 for 31 (or even close with 21 for 31) but we gave it a college try. More posts to come! Thank you all for your interest and support – Jennifer and Susan

My daughter Jenny has always known what she has wanted. When she was around 8, and maybe before, she knew she wanted a sister. She had two brothers and was feeling outnumbered so she began to pray for a sister. Jim and I had no intention of having more children but lo and behold about a year later I was pregnant. Jenny kept praying that it would be a girl.

With the help of a neighbor, she put on a beautiful shower for me. She even made the invitations. When April was born she was overjoyed – a sister at last. All of our kids saw the darling little blond-haired baby sister, not “the Down syndrome.”

The years rolled by with Jenny taking charge of the baby. Every night, starting when April was 3, Jenny would sneak her into her room to have her sleep in her bed. After many months of this we bought a trundle-bed and moved the girls in together permanently. That girl really knows what she wants.

Jenny and April 1988

When April was around 14 months old we started private speech therapy. Teaching a child with DS sign language was a big thing back in the day. We carried on and April and Jenny and the whole family learned many signs. I took April’s siblings to many, many speech therapy sessions. The boys would usually play but Jenny would watch the sessions through the 2 way mirror.

Fast forward to when she is 14. Jenny tells me she wants to be a speech therapist. Much education later she is! You never know how the children with Down syndrome are going to influence your other children. Jenny wanted a sister, wanted to watch the speech therapy, and finally wanted to be a speech pathologist. Like I said before- that girl knows what she wants!

Susan

Inspired by another blog – here are the Top 10 Things I Like About April (That have nothing to do with DS and in no particular order)

10. Her blonde hair – never ashy or brassy – just gorgeous.

9. Her toenails – seriously! She gets them pedicured all the time and I love the colors she picks

8. Her sense of humor. She gets really giggly at night like I do.

7. Her love of literature. April likes to read – and discuss – just like me.

6. Her determination. When April sets her mind to something, great things happen! (Like her Biggest Loser Challenges)

5. Her easy-going (on most days) personality. April doesn’t need to be entertained; she likes to hang out and talk with the girls.

4. Her love for God – If I had the faith and devotion of my sister I’d be a much better person by now.

3. Her kindness toward my sons. April is a sweet and tender aunt who loves to dole out the kisses.

2. Her crooked pinky. This might be related to DS, but I have the same one.

1. Her ability to give people ridiculous nick-names that stick. Like Snoop Face. (And then call you that in public, in front of your co-workers.)

I love you Sister~ Jenny

PS  – She also donates blood! I could NEVER do this (unless it was life or death). So ANOTHER reason I admire my little sis’

Today all three of my children, ages 21, 17 and 12 went to Halloween in the Woods.  Was this appropriate given their ages?…

…Well,  I have to tell you I am sick of the word “appropriate.”  It has been used by teachers, therapists, in IEP’s and by me more times than I care to think about.  I was using it just last night at the dinner table. “Jake that is not appropriate” – -blah, blah, blah.

Sometimes kids just want to have fun.  April, Jake and Sam put on all black clothes, tied on their capes, had their hair spiked and grey eyeshadow put all around their eyes.  They put in their fangs and off to the park we went.  Jake and Sam went to each booth to Trick or Treat.  April just walked around and watched because she knows she is too old.  OK, she went to the face painting booth to add glitter blood to her face. Everyone loved having the kids come to their booth.  We had a great time at the park and finished up with a Magic Show.  Was it appropriate given their ages?

I had a ball and the kids had fun.  That is what mattered today.  Loosen up and enjoy life with your kids with Down
syndrome.  Who doesn’t enjoy dressing up in costumes- no matter what the age?

Saturday, October 24th is the 19th annual “Make a Difference Day.” In honor of the day, Sam (April’s brother, who also happens to have Down syndrome) made a difference TODAY.  Sycamore Jr. High School made 1,000 sandwiches to feed the homeless today.  That’s right every student and teacher in school was given the opportunity to make a bologna and cheese sandwich.  The school makes 250 sandwiches every week to send downtown.  I volunteer to help with the program and Sam sees me every week with my “glubs” (gloves) on.  He was thrilled that today he got to help too and wear those glubs.

Our kids with disabilities get a lot of things done for them.  We need to teach them to help others.  Jake and
April volunteer at Matthew 25 Ministries.  April has helped prepare food that is sent to Haiti.  Jake takes newspapers to church to put in a large bin in the parking lot.  The Youth Group gets to keep the money from the sale of those papers.

Teach you kids to give!  Go to ”Make a Difference Day” and let your kids see the web site.  You and your family can make a difference by giving your old clothes to Good Will, taking old books to the library to put in the “Friends of the Library” bins, holding open doors for other people, or taking canned goods to church for the food pantry.  Talk to your children with Down syndrome about how they are helping others. Teach them to give and volunteer.
- Susan

Flattery or Insanity?

When April was 10 she loved to watch Hayley Mills in The Parent Trap. So much so she wanted to be just like the twins. Unfortunately she dubbed our next door neighbor “Vicky.” For those of you who don’t know the movie Vicky is the evil, gold digging fiance of Mills’ father destined to stop a reunion between her divorced parents.

Reenacting the very elaborate scene where Mills attempts to scare Vicky out of  their lives, April got up at 6 in the morning… Wandered next door to “Vicky’s”… and t-p’d their playroom. She was caught by Vicky’s husband (who also happened to be our family MD) as she was opening the jar of honey needed to lure a bear into the house.

At 20 I was horrified by this behavior and mentally tucked away the following lessons:

1. Make sure all doors are locked in the house. A kid could get in.
2. Don’t get on April’s bad side – she holds a wicked grudge and is very creative.
3. Don’t let your kid watch a video until they have every act and line memorized.
4. Work hard on establishing reality vs. fantasy from an early age.

At this point in her life we just like to use the story to embarrass her. April would never do something like this now. But if you question number two in my list you haven’t read enough of my posts!

Here we are! All of us together – Amazing!

(Left to Right) Dad/Jim holding Henry, Mom/Susan, Pete, April, Dan, Jenny, Lindsey, Sam, Derek, and Jake – Jack in the baby jogger. Yes it was cold, but we had a lot of fun! Jake and Same don’t look too happy, but really they were. See the rest of our pictures on the picture page.

2009 Buddy Walk with Meyers – Bekins Family

“I hear the voices in my head…”

You may be troubled by this statement if:

• If you were talking to a 21-year-old without DS
• You have limited to no experience with adolescents or adults with DS
• Your background with mental wellness is limited

Young adults with DS and other developmental disabilities have a higher rate of mental wellness concerns. I find this especially true of “high functioning” individuals. And people who have difficulty expressing themselves on a concrete level have significant issues describing their emotional states.

In the case of the opening quote it simply means -

I have thoughts and feelings in my head that conflict. I’m not sure how to address the problem I am facing with/at [insert person or situation of choice].

Having a supportive physician and psychologist is important in determining how to accurately diagnose and address the very real problems of anxiety, depression, and other mental health disorders.  In contrast, the individual may be facing real life transitions and not know how to sort out external events and internal feelings.

The problem is finding the individual(s) with the expertise to guide the diagnostic process.

In Cincinnati the Jane and Richard Thomas Center partners with the Division of Developmental and Behavioral Pediatrics to provide mental health services to children and adolescents with DS.

Parents can also find help in the excellent book, Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges, by Dennis McGuire and Brian Chicoine.

Keep in mind individuals with DS may have health problems influencing mental wellness including:

• Sleep Apnea
• Cardiac Conditions
• Hearing Loss

It’s important to make sure the obvious possibilities are explored – if a professional says “It’s just the Down syndrome” move to a new professional. Mental wellness is essential to life enjoyment – just as physical wellness is. 

For more information visit : http://www.ndsccenter.org/?page_id=76

I have been inspired by a number of parents in my area to blog consistently during October. Because…

October is Down syndrome Awareness Month!

I am getting a late start – they are posting 31 for 21, so I’m adapting and doing 21 for 21. Look for more to come.

Henry and I at the Tri for Joe benefiting the DSAGC