Homeschooling a Downs Syndrome Child

Beginning when they are young

I want to share a bit of what I have done as I have begun the journey of homeschooling my daughter with Downs Syndrome. I am writing this from my perspective which includes who I am, who my daughter is and our family. Each of us have different circumstances and so we will need to adjust for those circumstances. Miss K was our first child, my personality is to dig in and research something, and we are living overseas.

Some know prior to birth if the baby has Downs Syndrome which will give time to adjust and prepare. We did know until Miss K was born that she had Downs Syndrome. Soon after she was born I began the task of learning and researching. Babies with Downs Syndrome edited by Karen Stray-Gundersen is a good starting place.

The first thing to address is any physical issues. Miss K needed two surgeries. At 72 hours she had surgery to correct the duodenal artesia. Then at 2 weeks of age she had heart surgery.She came home from the hospital at 26 days. Thankfully, at that time she no longer needed further surgeries, observations, medications, no feeding tubes or anything else. I know that is not the case for all Downs Syndrome children so those things could impact what can be done.

After medical, the next decision is what services are available and how are you going to utilize them if at all. For us we did not have the option of a “Birth-3” program. We did have a physical therapist that met with us when Miss K was a month old and then would give us goals and when we accomplished those goals we would go back for a follow-up visit. This particular therapist pushed Miss K. She felt that Miss K could do things and so she pushed. She did not allow me to celebrate an accomplishment for long but pushed us to the next milestone. The physical therapy was something that we did at home with her.

Another consideration is the things that she surround the child with. When I was in graduate school I read Jim Trelease’s book The Read Aloud Handbook. When we learned that Miss K had Downs Syndrome, I remembered a example of the power of read alouds from that book, a girl who was considered beyond learning but whose parents read to her everyday and she did learn and was able to tell her which were her favorite books. That inspired us and so even before Miss K was moved out of her incubator to a bassinet we were reading to her. Those days when we could not hold her, we could read to her. We surrounded her with books.

We found toys that had value at least in our eyes. One that we felt did add value was a kick and play piano that we tied to the end of her bed. It did encourage her to kick and we wanted to get and keep her moving. We hung all kinds of things from the mobile to encourage her to bat at things. We did experiment and found a few that were duds for various reasons.

So for us the first months were spend beginning to physical therapy, encouraging her towards the milestones, beginning to learn what it meant to have a child with Downs Syndrome, reading to her and loving her.

That was the beginning of our homeschool journey.

Just for one day

can I be a mom on a normal child? All I am asking for is one day, 24 hours.

I love my daughter but some days the extra chromosome is more than I can handle.

If she would take a nap, I could see how quiet and peaceful she really is and that would make the carton of eggs that she grabbed, the whining, the stubborn will all go away.

Maybe it is time

to start potty training in a real way. I found Miss K putting baby on the potty. The funny thing is to get Miss K to go we make some sounds and she was making those sounds for baby. I did find the incentive -- M&M's. Now we just need to work on this. I really don't know if she has the incentive of "big girl pants" or a desire to get out of diapers. I have a desire to get her out of diapers.

Pray, pray

Miss K's pronunciation is not that clear - that is background information. The setting was her highchair and the leftover blueberries from breakfast while the noodles were cooking. I do usually pray with her before her meal so she is used to that. She was saying something which I could not understand but she kept repeating it then she grabbed my hand and held it just like we do at pray time. I got the message -- she wanted to pray for her blueberries.

Later, I served her the noodles and again we prayed for the noodles.

I keep telling myself that I am not always sure what is getting in her head because of her delay in verbal skills we know what all is in there but lunchtime was a reminder of what is going in and what she understands.

I am encouraged to keep putting information in her and know that someday it will come out.

A Community

It was not a community that I had planned to join but one that happened. It has been an encouraging, supportive, informative, and great community. It is the parents are relatives of Down Syndrome children. I think back to the many people through these years that have been there.
My friend had a dear friend with a DS son.
Our teammate who became Aunt B has a nephew 10 years younger than she with DS.
My sister-in-law has a nephew with DS.
One of K's first babysitter had an uncle with DS.

Then through the years that has been a connection. Parents that have opened and shared their experiences, what they have learned, listen to your fears and concerns, and understand. The other week Miss K and I met with a family visiting here with a DS son about 10 months younger than K. For those of us living overseas it is a blessing to meet someone who is in the same situation that we are.

I have also had some online community as well. Even before K came home from the hospital, I had joined a Yahoo Homeschooling DS children group. They welcomed me knowing that it would be some time until I would formally start homeschooling. I have learned so much from them. One of those friends even sent me the K4 curriculum that has been developed for special needs children.

It wasn't the community I planned to join but I am very thankful for the support and friendship that I have found in this community.

Fun and more fun

I like things nice and neat. I colour in the lines. I have a 3 year old who enjoys having fun and often that fun involves something dirty. I am learning that it is good for her to do those things. I try to tell myself that it is therapy. I can convince my husband to buy just about anything if I say "it is for therapy." Now if I could just get the Circut for therapy I would be happy. I will ponder that one but I need to get back to the topic of having fun 3 year old style.

She had fun finger painting. That was a mess. I didn't have any nice washable finger paints. I can't find them in the stores here. I found a recipe online and tried that. I think we still have finger paint on the highchair. She had fun.

We tried the cooked spaghetti art. I think it must work better on construction paper than on some of my scrapbook paper. We picked up noodles off the floor for a few days as they fell off the picture.
If any notices, she does have other clothing. I think that outfit had gotten stained and so we wear that all the time around the house.

I am trying to put aside myself and do thinks that I know my daughter will enjoy and hey, it is therapy. I did stock up on art supplies when we were home. We now have washable finger paint. We tried it this morning and it was great.

What does this say?

A few years ago at Christmas I said "I don't want any toys that require batteries or make noise." That came from all the toys that we had received that had batteries and made noise and drove momma nuts. Everyone followed that request except one sister-in-law. She tried to say that she was giving K an educational toy but it required batteries and made noise. I do still talk to her.

Well, for the past year and a half K has had her Leap Frog Refrigerator magnets. She has played with them some. I am obsessive in the sense that we have to keep all the letters together so they stay in a basket on top of the refrigerator. They are on the refrigerator just the top and not the door. K knows where they are kept and she will ask for them. We have a rule that she plays with them on her blanket.

The other day as she was playing I was listening to her repeat the sound with the letter and she did a great job with some of the sounds. I then showed her the M and asked what does it say and she replied /m/. I showed her the P and she said /p/. I think she has also learned the D sound as well.

For the post part I really don't think that many toys of today that claim to have educational value really do but this one I will say has some educational value.

Now I am beginning to think about that master's thesis that I edited where the discussion was teaching letter sounds before letter names. I might just have to research that a bit more.

I tried to get a short video clip of her saying her letter sounds but she saw the camera and decided not to perform.

This is a picture of her working on her numbers. That picture was taken a few months ago. It is August and we do not wear sweatshirts either in the house or outside of the house. Not when the temperature and humidity are both in the 90's.

My baby turned 3 today

Three years ago she entered our lives at just 6 pounds 1 ounce. We didn't know what all was ahead of us. We just had our first child. Three days later she had her first surgery to correct her stomach. We thought that was all and that she was fine and then learned about her heart. At two weeks she had her heart surgery.

When I filled out the order form for first child, I admit, I didn't check the box marked "Down Syndrome". God gave us what he knew we needed. We needed Miss K with Down Syndrome. We needed to love her, push her, encourage her, laugh with her, praise her, train her, teach her, hug her, tickle her, kiss her and all those other wonderful things you do with babies. We were able to sit and watch how God has shown us that he cares for her and us. It began with the hospital bill, then the PT, the free exam at University of Washington, then the EI center, and the list is more than we can recall.

I have a dear friend whose Chinese name is Kai-lene. I loved the sound and so we began to look for English names and liked what we picked. The English meaning isn't that great boomerang but we had a direct translation into Chinese and we liked that meaning -- victorious and beautiful. The middle name is one that my husband liked. We had two spellings and different meaning based on the spelling. We had planned to spell it one way but then last might sitting in the hosptial room as we were filling out the paper work we looked and realized if we spelled it the other way each name would have a letter that went below the line -- g, y, and another y. Only and engineer would engineer a name.

Today she speaks some words, she is a great eater, she walks, she laughs, she climbs out of her Pack 'N Play. She says "bye" when she doesn't want you around in a very independent way. She loves her baby. She is not delayed in whining or in stubbornness.

She is a joy and a blessing to our family.

This was a few weeks ago but shows her independent spirit.

K is for

Last night Miss K was playing with her MagnaDoddle. Her daddy decided to join the fun and so he wrote her name on the MagnaDoddle. She saw that and said her name. Okay, it is the short version of her name but her name.

A little bit later she had an alphabet book. She saw the letter "b" and said "b".

Time for me to read Teaching Reading to Children with Down Syndrome again. I was flipping through it last night and it talked about how some children will be able to read and talk before they can just talk. We will begin to focus on reading. I had done Doman's Teach your Baby to read when she was young. I still have all the cards that I made from that. Now we are going to move to some smaller cards.

More Training Needed

Well, I posted the other day about child training. Please do not think that I have arrived, have completely trained her. We still have a ways to go as was seen at lunch today. It was one of those moments when you know you still have work to do. One of those things that catches you off guard. One of the times that you try to say "no" while not laughing.

We were enjoying a nice lunch with our dear friend, B, Miss K had a hot dog, french fries and daddy had shared some of his broccoli with her so that was added to her plate. I was turned looking at my sweet husband and telling him something when I saw a piece of broccoli land in his lap. I look at a innocent looking two year old who has turned her head to look at things behind her. I look at our friend, B, and she is trying not to laugh. She saw the whole thing and did say that Miss K had a great throw. She put her arm back and then let go. I guess it was good aim as well as it landed on daddy's lap.

Back to training.

Child Training

One of my biggest responsibilities as a momma is train my child. Training involves so many areas of life. Training to sit during a church service, training not to touch things, training to come when I call, training not to pull all the clothing out of the boxes, training to say "please" and "thank you" as well as training to help and work.

Some days I feel like I have not done a good job training especially when I see all the clothing pulled out of the boxes (we don't have a dresser rather two boxes that hold her clothing on the changing table) which happened this morning. I should have known she was quiet and in her room which usually means she found the clothing.

One of my big goals is to focus on lifeskills because those are things that she needs for life. My goal for her is that she will be independent and be able to live on her own if she desires. I like the Montessori aspect in teaching lifeskills to children.

This week we have been working on washing, drying, and putting dishes away. She knew how to put her dishes in the sink and would put any dish that she found dirty or clean in the sink. We have a bookshelf in the kitchen as our pantry so clean Tupperware containers are in easy reach. Washing is fun because it involves water. She has watched daddy wash with his brush and so she needed a brush too and don't forget soap. She would scrub the bowl and then we would give her a towel and she would dry it.

Then I would open the dish cabinet and let her put it away.
We also started to work on setting the table. I opened the dish cabinet and let her get her bowl out. She then put it in the sink to have it washed. I guess we need to work on that a bit more.

We still have lots of training to do but it is exciting as we take little steps in this direction.

Life is Precious

I so agree. If you have not seen this it is worth watching but you might want to have some tissues handy. 99 Balloons

It made me pause and think about celebrating every day in a special way.

It happened

One thing I have learned with summer weather and summer clothing is the shirts are not always tucked in or have snaps at the bottom. This morning I am having my weekly Chinese lesson when I look over at Miss K who is sitting in the highchair watching a video and notice that she has taken off her shirt.

I could handle pulling up her dress. I knew that would happen and we would talk about how a lady doesn't do that but taking off her shirt. I didn't think it would happen but it did.

Help! How do I deal with this. Better get out my books and see if they have any suggestions.

Mother's Day Album

The mother's day album is now ready for viewing. I have enjoyed looking at all the pictures of moms and their children with a little bit extra.

Speech Therapy

In the past 2 1/2 years almost 3 year God has reminded us time and time again that he is caring and providing for K's needs. It began in the hospital with doctors and nurses that were willing to operate even though she had complications with the heart catheterization. It was the hospital bill that just floored us because it was so low. It was the PT who for 2 years donated her time. It was the developmental doctor that we were able to see for under US$3. One of the best doctors on the island. I can't share all the ways that God has provided as it would take a book and she is only 2 years old.

The most recent blessing was a speech therapist. Living overseas we don't have the same resources as in the US. Finding an English speech therapist has been impossible. We moved to our new city and I went to a moms group in my town. The leader asked about K's speech and I responded with my pat answer, "that is her biggest delay but it is improving". L, the leader then said, "if you need help, let me know I am a speech therapist". I found one, finally but that isn't all. She speaks English, with a slight southern accent. L lives in the same village (like an apartment complex) as we do. So every Friday afternoon we walk to the back of the village and have an hour of speech therapy usually involving one of two of her children.

Here are some pictures from Friday's speech therapy. Making peanut butter crackers.

I thought I had a little more time

I remember soon after Miss K was born writing to a friend and telling her that I am sure it will be my daughter that will be walking around with her dress up. I thought that would start maybe when she is 6 or if she is advanced 4. Well, spring came and it seems now that her shirts are being pulled up showing her belly. We are working on learning to put your shirt down and keep your shirt down.

Oh the joys of being a special needs momma. It is full of laughs as you watch and listen to the the funny things. She can beg for pretzels with the babble words that she has and repeat and repeat until we all end up laughing. There are also times of tears but thankfully now there are fewer tears. She is one great kid.

Worldwide Down Syndrome Day

I missed it. I guess that is a result of living in my own little world here in what often seems to be the middle of nowhere. Now that I know about it I will remember it next year. It is rather easy to remember 3-21 is Worldwide Down Syndrome Day. Why that date? Down Syndrome is 3 copies of the 21st chromosome.

We have lived with DS for 2 1/2 years. It is full of ups and downs. Now seems to be more ups than downs. I do remember the downs, the days of wondering, tears, fears, and not knowing.

Things I am thankful for about Down Syndrome:
1. There is quite a bit of research and books available. I have a collection on my shelf -- Teaching Math to Down Syndrome Children, Teaching Reading, Gross Motor Skills, Fine Motor skills, Language and Communication, Babies with Down Syndrome, and a few more.

2. This might sound a bit strange but in a way I am thankful for the distinct features. That clues people in a bit. I am also thankful for her small size because people don't often realize she is as old as she is so their expectations are not as high.

3. I am thankful for the community I have met through DS. I have met so many wonderful moms and dads and extra blessings. I remember soon after Miss K was born and we learned she had DS I asked a missionary if she knew anyone anywhere who has a DS child and was living overseas. No, she didn't but then a week later she called and said they just remembered a couple living 2 hours south of us with a 10 year old son. That was the first parent I talked to and I was so encouraged. I also joined an online homeschool group after we learned Miss K had DS and even before she came home from the hospital. That also has been a source of encouragement and help.

4. I am thankful to God for all he has done in the past 2 1/2 years and know that he will continue in the years to come. He actually began working before she was born in moving us to deliver in a hospital that had a NICU. He provided doctors who were willing to take risks and perform her heart surgery. We had a wonderful PT who pushed Miss K and donated her time to help us. This list goes on including the Speech therapist that lives here in my village in the middle of nowhere and is working with Miss K.

Today most days she is just Miss K who keeps us laughing and some days she is Miss K with that extra chromosome that gets in the way.

So today I am celebrating a bit late Worldwide Down Syndrome Day but really I celebrate it every day.