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

I’m speaking at and attending the NDSC  convention in Sacramento this weekend and am so encouraged by the information I’ve received and the people I’ve met. This afternoon attended Dr. Brian Skotko’s session on siblings of children with DS. He started by asking the parents in the audience to call out words describing their own sibling relationships when they were children. Without hesitation they came spilling out:

mean, bossy, annoying, fun, confidants, friends, competitors, anger, hate, love

The audience came up with over 25 adjectives describing their sibling relationships. These were validated and used to make points about children who have siblings with DS, their feelings, and the questions they are asking. As an adult sibling I couldn’t help but realize something:

I still have questions.

April wants to get married. April wants to have a baby. I ask myself – Will these things happen? Should I tell her she shouldn’t have children? What are the deeper questions going on in my own mind – Can she manage a marital relationship? Could she care for a child and keep them safe? There’s no question she would love and devote herself to a child… And more questions, hard ones – What’s going to happen when my parents die? Does the responsibility have to rest solely on me for the care of April, Jake, and Sam? Would that be the best option for my own family – and for them?

There are no easy answers to all of these questions. But they can start a new dialogue:

With April – Does she understanding what being a mother entails? Perhaps she could be my mother’s helper. This would allow her to see how involved and demanding parenting really is.

With my parents – What are their ideas for the kids after they pass away? When will they establish a will and trust? They haven’t yet and this causes me endless hours of anxiety.

With April, Jake, and Sam – What do they see themselves wanting for their own lives? Would they even want to live with me, my husband, and sons?

With my brothers Derek and Dan – where do they see themselves in the picture? What is their preconception of what will happen in 5 years, 10 years, and beyond? I tend to be the second mother and orchestrate these things – but really – what do they think about these questions and what suggestions do they have?

With my husband – where does he see our “family” (our sons and each other) in the future as it relates to my 3 siblings with DS? Clearly he knew our life would be unique when he married me!

There aren’t easy answers to these questions, but at the very least we can start more discussions together as parents and adult siblings. Thank you Brian.

My sister. My sweet sister…just kicked me off of her Facebook friend list. Why? What could I have possibly done to deserve this? Read our unedited FB interaction below:
[Me] April – Please do not write on the Zac Efron sites. I love you. But you cannot threaten to send the Marines to get people you do not know. It’s inappropriate.

[April] Forget it is to late sister I am fan of Zac Efron take it or drop it how is working coming along ?

[Me] Sweetie – you can be a fan, but can NOT write inappropriate comments to people you do not know on fan pages. Also, do not forward pictures of him for others to see. Thanks. 

[April] I am going to nore you on my face book forget it sister like it or not I love Zac Efron.

Following her last message I was de-friended. In hindsight I was (a bit) bossy. That’s so unlike me.

It’s amazing how appropriate this action really was – and frankly I’m proud of her. When grown adults I know get angry, break-up with a boyfriend, or are generally annoyed at someone a ’defriending’ can be quite common. So for April to get fed up with me and give me the boot off of her friend list shows a real savvy for understanding how the site works.

It can be difficult for teens and young adults to know how to navigate social networking sites – just think about how about ‘typcial’ teens and their inappropriate pics and comments can be. Individuals with Down syndrome may have a reputation for being social, but reading the nuances of non-verbal messages is not typically their forte. So when I saw what my sister had done I burst out laughing and told everyone in the office.  I was amazed she even knew how to get rid of me – her very bossy, ‘pain in her side’, sister.

So now, I have to do my part – apologize – and try to become “friends” again. Wish me luck!

It is so hard to believe that April tured 21 this month. She is an amazing young woman whose life continues to inspire me. April at 21 has a job, a boyfriend, a FaceBook page, email, and countless other “typical” interests and activities.

21 years ago I held a 7 lb 12 ounce baby in my arms.
21 years ago I was thrilled to know I finally had a sister.
21 years ago I cried when I found out she had Down syndrome.
21 years and I still have my worries about her future, her life as an adult.
But the last 21 years have taught me that predetermined limits and expectations can be shattered. My parents love, determination, and persistence has helped mold April into the beautiful woman she is today. A self-determined, caring, and engaging person who is a joy to call sister. .. and the future with her is brighter than ever.
Happy Birthday April!

April and her boyfriend on her birthday

(PS Margaritas on me)

April is passionate about a lot of things. Church. The Florida Gators. Email. And – The Biggest Loser. Over the last year she has lost about 20lbs. and is religious about sticking to her biggest loser goals. For instance – during Christmas she left the dinner table because the plate of cookies I brought to share was “tempting” her. 

Earlier in the fall April and I were on a “team” partnered to lose some weight (mine from having a baby, hers from – well… life).  We were doing well – encouraging each other and steadily losing a few pounds. And then….

I got kicked off the team.

Yes, my dear, sweet, lovable sister kicked my off of her biggest loser team. After Thanksgiving she told me, “I’ll see you in the elimination room!” She sent me emails – “I hope you eat a lot of donuts and gain back the pounds.” Okay, I admit we have years of antagonizing each other behind us and apparently years more to come! Once kicked off the team my natural tendency to drive her crazy kicked into overdrive.

And was completely ignored. Aside from the rude emails. So what was I to do? On Christmas after getting the cold shoulder I tackled her to the ground and smothered her in kisses. I tickled her to death and begged her to take me back. She didn’t budge despite my efforts.

So, April. The feud is on. I will be the biggest loser! Go pink team!