Tuesday, November 29, 2016

Denying Myself, Serving My Daughter

23 Then He said to them all, “If anyone desires to come after Me, let him deny himself, and take up his cross daily,[a] and follow Me. 24 For whoever desires to save his life will lose it, but whoever loses his life for My sake will save it. 25 For what profit is it to a man if he gains the whole world, and is himself destroyed or lost? 26 For whoever is ashamed of Me and My words, of him the Son of Man will be ashamed when He comes in His own glory, and in His Father’s, and of the holy angels. 27 But I tell you truly, there are some standing here who shall not taste death till they see the kingdom of God.”  Luke 9:23-27 NKJV

Have you ever read something in the Bible that took on new life to you?

After I had Jaycee, some verses became more alive to me due to my new role as a parent of a child with medical and special needs. This scripture in Luke is one of the first ones that both challenged me and reassured me at the same time.

For any Christian, this verse sets the bar high. We are to take up our cross DAILY, which means we need to surrender ourselves to serve God fully. In other words, we are to die to self and follow Jesus no matter the costs. This can mean that we are expected to say no to selfish desires that will cause us to be pulled from God. These can be little things (movie choices) and big things (relationships) that we must decide. This can also mean that we are not to love our lives more than we love God. This means some may make the ultimate sacrifice for God like the martyrs from the Bible (i.e. Stephen). Fortunately in America, we don't usually face this situation.

As a mother of a child with special and medical needs, this verse reminds me of the bigger picture. Like any other woman, I expected to give birth to a healthy baby, raise that child for 18-21 years, and have all sorts of mostly positive experiences in between there.

Then suddenly life presented a different path. My baby was born with heart problems and a genetic condition. I would possibly be raising this child for the rest of my life.

At first, the thought of raising a child forever was overwhelming. But, before I dealt with that, there were immediate issues I had to face first. I had to deal with the fact that my child needed therapy several times a week to help her muscles and development. I had to deal with doctors and specialty appointments to keep my daughter healthy and alive. I had to make trips to the pharmacy and track medications daily. This was not the mothering experience I was expecting. I had to manage my emotions and thoughts about the situation. I loved my daughter, but caring for her was much harder than I was anticipating.

Through prayer, God showed me how to manage my emotions. I needed to view my role as a mother not as work but as a bigger lesson in self-denial that would glorify God. I would have to make job decisions (part time employment versus full time) because of my daughter's needs. I would have to choose vehicles based on their space for her equipment. I would have to give up sleep and recreational activities to help her and care for her. I would have to spend money on her medical bills that could have been used for something much more exciting and happy. I would have to devote extra time to teach her skills that come naturally to other people. Some of these things were easier to do than others, but when I viewed my care giving as serving unto God, hard things became less hard.

There is a beauty in self-denial, because that is the place where true life is found. It is the place where I learned that my needs aren't really that important. It's the place where I found the satisfaction in serving another person. It's the place where God shows me how strong I can be. It's also where love is found.

Because of my daughter and the gift of being her mother, I have learned how beautiful serving someone other than yourself is. Love motivates me to keep going when I feel discouraged. Love pushes me to give more time and effort when I feel there's nothing more to give. Love helps me see the value of all lives no matter what abilities they have. Love shows me that there is nothing more important than our relationship with God and other people.

I have came a long way since becoming a mother 10 years ago. Sometimes, I still have to check my attitudes and stop my pity parties. But, those moments are becoming less frequent. After all, I don't want to gain the whole world. I just want to impact my own little world around me.

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Tuesday, November 22, 2016

What My Daughter with Down syndrome is Thankful For

Turkey sales are through the roof here in America. Pumpkin pies are being whipped up in kitchens. Families are making plans for gatherings. Yep, Thanksgiving is this week.

Many people choose to take time during the festivities to reflect on all the blessings, people, and things in their life. Our family is no different. I wanted to make more of an effort this year to help the kids understand all the things they have in their life to be grateful about.

I printed off a pumpkin for each person in our family. Each day we wrote something or someone on the pumpkin that we were thankful for this Thanksgiving. My 7 year old son is able to talk about and write his own ideas. My 10 year old with Down syndrome is a little different. I was not sure she would be able to supply an answer everyday when we first started this activity. I knew she would need me to help her write her answers since that is a skill she has not mastered yet. 

So, each day we have had "pumpkin time." Usually, Elijah and I reread what is on our pumpkins. Then we add something to ours. Sometimes, Elijah cannot think of anything, so I brainstorm with him. I tell him to think of a person or food or toy or something he really likes. Then I read to Jaycee what is already on her pumpkin and asked her to list something else that she is thankful for that day. She caught on right away to what we were doing. Jaycee has not needed anymore help thinking of something than Elijah.

I noticed a pattern with Jaycee though.

While Elijah and I put a variety of things and people on our pumpkin, Jaycee has taken a different route. She has almost always wanted to add a person each day to her pumpkin. That should not have been a surprise to me. Jaycee loves people!

The first person she added was her favorite cousin, Gabby. Then came mom, dad, Grandma, Amy, Elijah, AJ, Mrs. Tolley, Sandra, Jayla, Kinsey, and more. Those names on the pumpkin represent her family, friends at school, friends from church, and teachers. (Let's not forget that she's thankful for pasta, her iPad, and Disney princesses too.)

Jaycee has a pure and good heart. She really has the heart of God in that she loves all people. The beautiful thing is that she has many people who love her too!

I am thankful for all the people who value Jaycee and see her as much more than her diagnosis.

15 For this reason, ever since I heard about your faith in the Lord Jesus and your love for all God’s people, 16 I have not stopped giving thanks for you, remembering you in my prayers.
Ephesians 1:15-16 NIV
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Thursday, November 17, 2016

Therapy Tip- Let's Learn Colors!

Welcome back to Therapy Thursday!

This is the day I share a tip based on my experience as a pediatric speech-language pathologist and a mother of a child with special needs. Due to Down syndrome awareness month, Therapy Thursday was paused. But, now we are back with today's tip:

Let's Learn Colors

I'm always looking for new ways to help toddlers and young children learn colors.

There are 3 steps to learning colors that I check in therapy.
-Matching: Can the child match blue to blue, red to red, etc.? This can be achieved through puzzles and many available toddler games and toys. When this is pretty consistent, I move to the next step.

-Identification: Can the child point to the correct color when asked?  For instance, if there is one red car and one green car, then I would ask the child, "Show me the green car." All the child has to do is point to the right answer.

-Naming: This is the hardest level. Can the child name the color of objects? As the child tries to begin naming colors, I have noticed they often use their favorite color to name every object's color. This is a somewhat normal experience as they call everything "green," for example, in attempts to tell about colors. Over time, the children eventually learn to correctly name colors through repetition.

When I work on learning colors with children, I like to find new activities to address this skill so that I can stay excited about my work. 

I was recently shopping in the Dollar Store. I saw this really neat ice tray that makes long, skinny ice cubes for water bottles. I picked it up thinking I could use this for therapy, but I really didn't have a good idea for it at the time of purchase.

After some thinking, I came up with this:

I found the tray slots were the perfect size for crayons. So, I taped a different colored piece of construction paper in each cube slot. Then, I collected crayons to match to the construction paper. This created a coloring matching activity.

I often do activities with my toddlers in speech therapy that involve crayons, so this colored tray just became another tool to use. Before or after we started using the colors, I hand the child a crayon one at a time to place in the tray to show me they can match colors.

Simple and easy ideas are sometimes the best. Give it a try yourself.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, November 15, 2016

"A World Without Down's Syndrome"- My Take

Have you ever watched or read something that resonated with you strongly?

That happened to me recently. Twitter was all abuzz about a BBC documentary "A World Without Down's Syndrome." The hashtags #justaboutcoping, #worldwithoutdowns, and #worldwithdowns grabbed my attention. I decided I had to check this documentary out for myself.

Sally Phillips, an actress, screenwriter, and mother to a child with Down syndrome, tries to explain the complexities that arise when countries mandate prenatal tests, which have become more accurate in definitively diagnosing Down syndrome.

I'll be honest, I thought the title was a little attention grabbing when I heard it. There is no possible way that this world would ever be rid of the genetic condition of Down syndrome. Even though, I am aware that abortion rates are extremely high when babies are prenatally diagnosed, I have always felt there would be a pocket of people who could accept a baby with Down syndrome.

After watching this documentary, I felt much less optimistic. In the UK, 90% of mothers decide to terminate pregnancies in which Down syndrome is diagnosed in screenings. In the UK, late term abortions are permitted due to Down syndrome being considered a severe disability. In Iceland, the documentary reports the number of terminations became 100% after screenings were mandated. How is 100% even possible?

When the credits rolled at the end, I wept like a baby. I cried for the ignorance of people. I cried for the injustice of the unborn whose lives are never lived just because a test shows they are going to be different. I shed tears over the fact that people do not want to have a child like mine. I sobbed for the women who are put in this situation to decide. And, I prayed for the people of this world and their skewed definition of humanity.

Surely this documentary was biased right?

I don't want to believe we live in a world that views people with disabilities as "burdens" and questions their right to life. But, then I read other things online too. Take Richard Dawkins, a scientist, who said on Twitter it would be immoral to carry on with a pregnancy with Down syndrome. He offered no apology for his statement claiming that he was approaching this subject in a logical way, and that the woman ultimately has the right to choose and try again.

I had a dozen questions in my mind after watching this documentary such as:
-What constitutes a good life?
-Or better yet...what is the purpose of life? Success? Achievements? Independence?
-Is the termination of a pregnancy confirmed with Down syndrome seen as a mercy for the unborn baby or an escape for the parent who was expecting a child with no disability?
-If Down syndrome is a reason for termination, where is that line for other disabilities or conditions? In other words, what are "acceptable" conditions that termination would seem inappropriate for?
-Should every pregnant woman expect/deserve a healthy baby? Is it a right of the woman to receive a healthy baby?
-Should a fetus only be guaranteed its life when it's genetically perfect?
-Why is disability/Down syndrome perceived so, so negatively?
-Is our world simply chasing after perfection, which will truly never really exist?

These are questions with no good answers.

You see I don't believe God intended for us to make these decisions that science now allows us to make. I fear for those with disabilities who, in my opinion, face the greatest discrimination with smallest amount of advocates.

My daughter has taught me that a world with Down syndrome is not so scary. When we were first told Jaycee had Down syndrome, I knew of 1 person in our community with Down syndrome. One! Since then, I have met other people with Down syndrome in our local community, but we felt isolated for so long.

Because of that feeling of isolation, we made a choice early on to try to integrate Jaycee into the community. She attends church with us. She attends public school. We try to take her to community festivals or parades when possible. I have written a few articles for our local newspaper regarding Down syndrome and have arranged public fundraisers for our Down syndrome Association. All of these are our family's attempts at normalizing Down syndrome in our community.

We have always felt we may never be able to reach the world about acceptance of those with Down syndrome, but we may be able to impact the people around us. Hopefully these people know that we support a world with Down syndrome.

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