DS Coop: Decorating Gingerbread Houses

If you can believe it, in my entire life I have only made one gingerbread house. That was many, many years ago when my two oldest were middle elementary age. Until recently,  I haven’t felt Jessie would enjoy it.

That may be my very favorite thing about coop, Jessie’s willingness to try different things and hang with them longer than she would if it was just the two of us.

When we arrived, Cindy (aka Nana) had everything set up and ready to go. She had taken the frosting and put it in a squeezable container that has a small tip. Like the kind you can buy for ketchup, but clear.  You can see these in the first picture. This was so much easier for the kids to manage than the bag the frosting comes in.

Cindy’s family does gingerbread houses every year, so she’s a pro at this. She warmed the frosting slightly to make it easier to squeeze out. When it got hard to squeeze, we would put it in the microwave for about 30 seconds to warm it back up.

Ashley, the oldest, was able to do her house entirely independently. She’s been doing these every year with her Nana, so she’s a pro too.

Jessie and Joshua both started out squeezing the icing themselves, but after a while needed help. If you’ve never done this, it really is work to squeeze that icing out!

Heather and I helped them with the icing and they put all the decorations on. It was still plenty of OT (occupational therapy), fine motor work. Holding the small pieces with a pincer grasp and putting it in place with the right amount of firmness. Firm enough to stick into the icing to stay and not pushing the roof too hard.

Cindy had purchased some other decorations in addition to those that came with the kit. Each of their houses was decorated slightly differently. Cindy had several types of edible glitter, which Jessie liberally applied to the roof once all other decorations were in place. She LOVED the glitter.

The pink “glitter” has almost an Easter grass type texture to it. Shows up great. You can’t see the other true glitter as well in the picture.

It took us about 2 hours to decorate our houses. That was a long time for Jessie to stick with it. She enjoyed it the whole time, never got bored or wanted to give up. The whole experience of working together and enjoying this time with our friends will always be a sweet memory for me.  Oh yeah, Jessie enjoyed it too.

Jessie loves for me to display her projects in our home. She makes a lot of arts and crafts when she goes to her camps in the summer and I simply can’t put them all out. When I suggest she put some of them in her room she’s offended.

I didn’t have any, but will get some fake snow to go around the house.

Her gingerbread house is proudly on display on the piano in our living room. I really will enjoy seeing it all season long. Buddy (aka Bad Buddy, our 7 month old curious kitten) has already been interested in it. He is interested in anything new. The small tree on the piano was knocked over and the gingerbread house turned differently than I had left it just a little while after I put it on the piano. He continues to earn his nickname almost daily.

A friend of mine told me that cats don’t like the scent of orange and that a little spray of orange cleaner on the lower limbs of her tree last year stopped her kitten from climbing her tree. I plan to buy some of that cleaner ASAP. I want to be careful and will use a small amount though because I caused my cat permanent neurological damage diffusing essential oils.  What she used didn’t appear to have hurt her kitten in any way.  She only sprayed a little on lower limbs.

Whether it’s gingerbread houses or other festivities, I hope you all are making sweet memories this Christmas season.

Merry Christmas!


Down Syndrome and Alopecia Areata (hair loss)

I’ve had a lot of people ask me recently, not unkindly, about Jessie’s hair loss. Jessie has Alopecia Areata and although she has had it for a long time it’s more visible than ever.   Alopecia Areata is an autoimmune disorder that causes your immune system to attack your hair follicles.  It is considered to be Alopecia Areata when there is some hair loss but not complete baldness.  If all hair is lost it is called Alopecia Totalis.  Alopecia Areata is more common in Down syndrome, affecting 5-9 % of people with DS compared to 1-2% of the general population.

The first time we noticed some round bald patches in Jessie’s hair she was 3 or 4 years old.  It was on the back of her head and low, near the neck.  Unless we put her hair up, it wasn’t visible to anyone else.  After I mentioned it to her pediatrician, we later saw a dermatologist.

Although the dermatologist explained that it was an autoimmune disorder where the immune system attacks the hair follicles, it was actually a hair stylist that clued us in to there being a connection to when Jessie has been sick.  The hair stylist had a client who would get a bald spot (hers seemed to reoccur in the same spot) whenever she got sick and would later grow back in.  This isn’t mentioned in the articles I read, so this doesn’t seem to always be the case.  It makes sense to me, however, that it would happen when the immune system is stressed from sickness.

Since the first time Jessie had those two bald spots, I think she has always, or almost always, had one somewhere on her head.  Sometimes they were visible and other times not so much.  When she was 5 and in  preschool  she was sick more often than she ever had been.  She lost a lot of hair.  It wasn’t quite as visible as her current state because it wasn’t in the front.

Sometimes her hair grows in quicker than others, but it usually takes several months to a year.  Last year she had several ear infections in the winter.  She swims on the swim team and also had a couple of colds.  Looking back, I don’t think her ear was completely clearing up because now that it has, she hasn’t had any more ear infections since then. She has had two sets of ear tubes, and still has a tube in one ear.

It doesn’t 100% of the time seem to be linked to sickness, but is almost always during the “sick season” and rarely during the summer that she looses hair.  She will still have bald patches but won’t usually lose more hair during the seasons that everyone else is typically well.

There was one year when she lost most of the eye brows on one side.  It wasn’t very noticeable though because of her glasses.  When she was younger, Jessie didn’t think as much about it, but at 16, she’s very aware of it and sometimes she’s self conscious and sad about it.

When she first developed the bald patches we tried a topical steroid cream.  The dermatologist told us the cream didn’t have a high success rate, but that we could try it.  It didn’t work for us.  Adults sometimes do steroid injections into the scalp (suppresses the immune system) but that isn’t recommended for children.  The dermatologist said it is painful.  We didn’t consider that option at the time.

I haven’t done a ton of research into autoimmune disease.  Honestly, when she has less hair loss I forget about it for a while.  The hair loss though is an indication of an immune system malfunction (don’t you love my layman’s terms 🙂 ) If you google Down syndrome and autoimmune disease, most search results  have such a high level of medical jargon that I don’t understand the bulk of it.  What we have known for a long time though is that the immune system of the person with Down syndrome is impacted by the chromosomal abnormality.

Sometimes rather than think about autoimmune disease, I prefer to bury my head in the sand just watch Netflix.  But on a day when I’m feeling like my brain can take it, I plan to learn more.  I have listened to some other podcasts by Wellness Mama.  I find her easy to listen to and she interviews very knowledgeable guests.  I have heard her mention but haven’t yet listened to her podcasts on autoimmune disease but that’s on my list of things to do.

If you have knowledge about  or experience with Alopecia Areata and Down syndrome or resources to point me in the right direction, I would love to hear from you.

Hope you’re having a great week.  And that your hair isn’t falling out.   I couldn’t resist.


Jessie and Ashley fundraising for Special Olympics

Learning How to be a Friend

As I think about my blessings this Thanksgiving, near the top of the list of things I’m thankful for, are the friends Jessie has in her life.

My life is so much richer because of several close friendships I’ve had for more than 15 years.  My two older kids have friends that they have loved since childhood.   Jessie is so social, and I have seen that she too wanted to have close friends, but it has been a hard process for her.

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For several years now, Jessie has desired closer friendships than what she really was mature enough to cultivate.  Although she has always had friends, it’s just been in the last couple of years that she has had the ability to give and take in the ways that are necessary for a more mature and deeper friendship.

Brandi has been like a big sister to Jessie, looking out for her at swim meets and cheering her on. She has been such a sweet example to Jessie of how to be a good friend.

Until the last year or so, she would beg to have a friend over and then after just a short time I could tell she was ready to be alone.  Talking (all that processing), having to take turns with what her friend wanted to do (communicating and decision-making), and after only a couple of hours of being “on” she needed at least a little break.  It sometimes seemed to be sensory overload for her.  Maybe sensory isn’t the right word, but it was a lot of mental processing and it made her feel stressed.   After a lot of input she seemed to need, not just want, time to veg out watching something on her Kindle.  In the last couple of years I have watched her grow so much in this area.  

While the root of some of the difficulty is selfish behavior; it is also a developmental issue.  

For all kids it can be challenging to find good friends and to learn how to BE a good friend.  Add in slower maturation, communication challenges (either too much to process or having a hard time understanding each other) and it can be difficult to get beyond the surface level of friendship.  

Helping our kids with friendships is also a lot of work for the parents.

 I’ve been doing this parenting gig for 23 years now.  All kids go through phases in their development where it’s a lot of work for the parents when they have a friend over.  If I’m honest, I’m tired of this phase.  It sometimes feels like I’ve been doing some of the same things forever.  When Jessie has company, it has (most of the time) required a lot of my time and attention.  I have needed to be the interpreter if they have difficulty understanding each other, mediator when they are negotiating what to do or watch next, or helper with whatever activity they couldn’t  do alone.  Therefore, Jessie hasn’t had friends over as often as she would like.  

For most of the year, Jessie has a pretty active schedule with her Special Olympic sports and Miracle League baseball.  When our schedule is full, I haven’t been willing to work in having friends over very often as I also need  time at home to get my mama stuff done, and some unscheduled time to keep mama sane.  Sane might be too strong of a word.  Unscheduled time is necessary to keep mama from completely wigging out 🙂

I have so hoped, and prayed, that as Jessie got older that she would have mutually fulfilling, rich friendships.

I know some adults with Down syndrome that have the kind of friendships I have wished for Jessie.  I’ve hoped that she would have girlfriends with shared interests.  I’ve hoped she would have a friend that “gets” her and that she enjoys talking to.   

These two don’t see each other as often as they’d like but they love each other dearly. Michaela was the first close girlfriend Jessie ever had.

While she certainly still has room to grow in this area, I see Jessie maturing.  She is becoming more capable of being a good friend. She is more easily willing to compromise and is able to attend to an activity for a longer period of time.   Jessie realizes too, that she needs to enjoy her friends while they are with her and that later she can choose to do whatever else it is that she likes to do when she’s alone. She enjoys her friends for longer now before she needs down time.  

Since Jessie got her iPhone a few months ago, it has made keeping in touch with friends much easier for her.  She has several friends that she talks to.  When she and Ashley began to talk on the phone, it was the beginning of them becoming better friends.  

Jordan and Ashley were able to convince Jessie to give something new a try. She didn’t like it, but I was impressed that she was willing to try something different.

Jessie and Ashley are on the swim team together.  Sometimes they share the big dressing room together instead of going in separate dressing rooms.  Jessie and Ashley both enjoy Barbie’s (with a friend but won’t play alone!), they like many of the same foods, they enjoy coloring (in adult coloring books) while they watch tv. They both enjoy being silly and giggling over nothing and they both enjoy chill time.  They are content when they’re together and don’t require much intervention – mama can do laundry or dishes or whatever!

These two girls have been FaceTiming a lot.  Sometimes there is a lot of giggling.   Often they’re doing a “makeup challenge.”  I don’t really know what means, but it involves putting on a full face of makeup while FaceTiming.  Jessie has been into all kinds of “challenges”, something she has learned from YouTube, so sometimes they do other challenges too.  Sometimes they have colored while FaceTiming.  Jessie is usually scheming to see when they can get together again.  

They enjoy hanging out together.  They’re silly.  They’re giggling.  And hearing my girl giggling with her friend makes this mama really, really, happy and thankful.  

Hope you have had a great Thanksgiving!


What My Kid With Down Syndrome is Learning From Earning an Allowance

I wrote earlier this year about how all 3 of my kids have earned allowance and what they learned from that experience.

For all 3 kids, allowance has been a valuable teaching tool.  Some of the lessons Jessie, who has Down syndrome, learned were the same as her siblings.  But there are some ways that I feel the benefits were different for her.  Practice with thinking skills, learning to prioritize, counting money, these are just some of the skills Jessie needed practice with that my other kids learned more easily.  I am always looking for ways that we can use everyday life to teach her the skills she needs.

Thinking Skills Related to Money and Purchasing

The first ways that allowance helped Jessie learn was related to thinking about money.

  • Learning to prioritize her wants –  just like with my other kids, it seemed Jessie was constantly asking for things.  Initially, it was wasn’t a very prioritized list, just I want, I want, I want.  When she began having money of her own we would talk through her choices and whether she had enough or would need to save.  This process helped her think through do I really want what is right here in front of me in Walmart at the moment or do I really want “insert item she’s been talking about”?
  • Practice making choices –  It’s important for all kids to have the learning opportunity of making choices.  The process of thinking through what she really wants to do with her money has been a maturing experience for her.  Having her own money and deciding on a regular basis how to spend it has been one of the best things we’ve ever done.  This is true whether you make your child earn the money or just give them a set amount to manage.

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Keeping up With her Money

Learning to keep up with her money – this has been different than with my other two kids.  Learning the value of money and understanding that you have to protect your money (or phone) from theft has been a whole ‘nother thing with Jessie.

  • When Jessie goes places where she might want or need her money she carries a crossbody style purse.  It doesn’t slip off her shoulder like other styles and she is less likely to sit it down somewhere.  She doesn’t ever carry a large quantity of money with her if I’m not there, just in case, this is an area where she is still learning.  She does pretty well, but she doesn’t really understand the concept of someone wanting to steal her money or phone.  She’s doing well about not leaving it, but not so aware of making it less likely to be stolen.
  • At home – Jessie loves purses and bags.  Really loves them, so she has a lot. Thankfully, she does have just one wallet.  She moves her wallet from one purse to another or on bowling day she puts her wallet in a zippered pocket of her bowling bag.   When I ask where her wallet is, she often says I don’t know.  This is definitely an area of work in progress. Thankfully, she has a good memory, so we can backtrack and figure it out together.  I see that as a good thinking skill practice opportunity too.

Counting and Learning the Value of Money

Math and money seem to be an area of difficulty for people with Down syndrome.  I don’t have preset expectations of what we will achieve in this area.  I just try to find ways for Jessie to learn and to practice and in the end wherever we land, I will be content.   I know this though, workbooks and text books are not going to be the primary way she will learn about money.  It’s just too abstract.  But cash in her hand, she can learn to count money and she is motivated to do so.

  • Counting Money – Jessie doesn’t “count on” well yet.  She needs practice counting money and she is motivated to know how much money she has available to spend.  When she has made a purchase or earned more allowance that is a good opportunity for us to recount her money.  Even if I might remember how much money she now has, if she doesn’t, we count her money.
  • Learning what things cost and how much money you need to purchase – practice, practice, practice.  Even if it isn’t money she has earned, every purchase she makes with cash in her hand allows her to get practice with counting money and knowing what things cost.  For example:
  1. Rather than buying Jessie a drink or snack from the machine, giving her money and letting her make the purchase does a couple of things.  She learns that if the cost is $1.25 for a drink she usually puts 2 one dollar bills in and gets change back.  This is true for any cash purchase.  I try to remember to let Jessie pay when I have cash (even if she isn’t using her own money) for this reason.
  2. With practice making purchases she learns a better understanding of the value of money, like that $50 is a lot more than $2.  In our case, a WWE game that comes out once a year is a larger purchase.  She had birthday money but not enough.  She had to wait and earn allowance for several weeks to be able to buy the game she wanted.   She knew on a number line that 50 was more than 2 or 10 but understood much better the value of $50 after this experience. 

Using Money as a Motivator

We all like to spend money and buy things.  We all have to earn it.   We are willing to go to work because otherwise we have no money.  I use Jessie’s allowance as a way to motivate Jessie to do her chores somewhat cheerfully.  At least without a crazy amount of nagging.

We don’t have a very sophisticated chart or chores method.  It could be better, but I’m just not all that good at it. Our method is a good example of the fact that a less than perfect system can still be good for teaching and motivating 🙂

Jessie’s Allowance and Responsibilities

Jessie earns $5 per week.  She is expected to:

  • She folds all the towels and washcloths. She is learning to sort the bathroom washcloths from the kitchen ones and put them away.  We’re inconsistent on the last part, because of multiple layers of decisions….which ones go to each bathroom  and to kitchen isn’t all that clear.  I need to simplify the process if she’s to be independent with this part.
  • She doesn’t use any chemicals, but once a week she wipes her bathroom counter and sink.
  • She is expected to pick up her things from other areas of the house and put them away.  Often, this is with a reminder.  I’m okay with that for now.
  • She puts away her own laundry.  She brings her dirty laundry basket to the laundry room when asked.  I haven’t been ready to teach her to do her laundry because of the number of bbq sauce and ketchup stains on her clothes.  She packs her own swim bag twice a week, folding the clothes she puts in there and she re-hangs clothes in her closet when they aren’t dirty but have been worn a short time.  If not for the stain issue she would be capable of learning to do her laundry at this point.  I just haven’t been ready to go there because of the stains.
  • She feeds the dogs and cat once a day (reminded) and gives them water as needed when reminded.
  • Once a week, she takes the trash from the 2 bathrooms and her bedroom and puts them in the larger kitchen trash can or asks for help to transfer to a bag.
  • Once a week on whatever day I’m cleaning (changes depending on her activity schedule) she is expected to shake some rugs out and do a little sweeping.  She doesn’t sweep perfectly, this is more for practice than the help it provides.
  • After grocery shopping she takes toilet paper to each bathroom and shampoos etc to the appropriate bathrooms.  Learning where more groceries go is something we are working on just a little.

In general, she is expected to be a helpful part of the family with a decent attitude.  We have tried and haven’t been successful with sticking with a written plan. Jessie’s activities change seasonally, and I’m a fly by the seat of my pants girl, so sometimes we don’t always do things on the same day of the week.

Currently, I will write her chores on a white board, she takes a picture of it with her phone and she carries it around the house with her.  She watches videos on her phone  while she does her chores.  We’re super chill around here which might not work for everyone.

Since Jessie loves her phone so much and it has been a helpful tool  in many other ways I am working on a way to use a scheduling app on her phone with reminders instead of me reminding her. I will share when we get the kinks worked out with that.

Final and random thoughts….

Don’t get hung up on details, just start somewhere with giving your child a chance to practice skills related to thinking about and using money.

Keep the main focus you’re trying to teach the main focus.  Don’t worry about chores done perfectly. You’re working toward your child learning to be a part of the team of maintaining the home and motivating them to earn money.  It’s hard to accept what kids can do initially, but important for them to get to practice.  A couple of years ago, Jessie’s folded towels made me a little crazy inside, now her folded towels look pretty darn good.

Jessie get paid allowance on Thursdays every week.  She likes keeping up with her scheduled activities, including when she’s getting paid.  If I forget she will remind me or she might mention on Wednesday that tomorrow is her “pay day”.  It’s just one more factor in helping her learn about what happens when and anticipating what comes next.

Hope you’re having a great week!



DS Coop: What Can you Learn Making Healthy Muffins?

On our 2nd coop day we made muffins.  It’s sometimes easy to overlook all the good things that can be learned or reinforced during everyday ordinary activities.  I don’t know about you, but all too often I don’t include Jessie when I’m cooking.  OR, when I try to get her to help, she’s sometimes uninterested.  This day they all enjoyed the activity more because their friends were there.

When we arrived Marcy had bowls set up with the gluten free flour already measured out.  Marcy and Isaiah have been on a gluten free diet for a good while.  She has tried other brands but said  King Arthur Gluten Free Flour is her favorite.  Two of the students are on a gluten free diet so there was nothing included in the muffins that they shouldn’t have.

Each student made a different type of muffin.  We had banana, pumpkin, chocolate and blueberry muffins.  We had chocolate chips and blueberries that could be added to any of them if they chose.

Marcy talked with them about which ingredients were fruits, reinforcing what they learned the coop session before.  Each student measured their baking powder, measured and poured their cooking oil and cracked their eggs.  We used applesauce in some of them and less sugar.

They had no idea they were participating in an occupational therapy session, but that’s essentially what it was.

Each of these activities are great for fine motor work:

  • cracking the eggs
  • measuring baking powder and leveling it off
  • pouring the heavy-ish jug of oil into the measuring glass, it’s hard to control and get the right amount
  • stirring the batter – truly this is still hard work for Jessie, to stir the batter well enough and get it away from the edges of the bowl.  Her arm is tired by the time she’s done.
  • filling the muffin pan cups without leaving lots of batter on the top of pan to burn

​​Jessie enjoys making muffins now, but it has been a work in progress.  When Jessie was younger, on a day when I decided we would bake together, I would eagerly call her to the kitchen.  I would be anticipating how fun she was going to find baking like my other two kids had.  She did enjoy it, but couldn’t hang with it the whole time.

It was disappointing to me sometimes when I had set aside the time to purposefully include her and then her arm would get tired so quickly or she would get frustrated that she had a hard time measuring correctly.

If your child is younger and can’t stick with it  for the whole baking project, try not to be discouraged. Notice which activity is frustrating or that they don’t like.  Let them do what they can that is fun and work up to doing a little more on another baking day.

It’s good to push a little when something is hard.  But, it’s important to find that delicate balance between gaining ground in the skills you’re teaching and frustration that makes them not want to repeat the activity.

I sometimes would see baking as this great OT session.  I would encourage Jessie to keep going when her arm was tired and she wanted to stop.  I can see now that caused her to not want to participate the next time, she was anticipating that her arm would hurt again.  It would have been better to pull her up a chair and include her in the rest of the process without pushing her too hard.  It is better to strike the right balance of work and fun so she will be eager to come back and do it another day.

You may be thinking, “Push her too hard? It’s just making muffins!”  Every kid has different strengths and weaknesses and stirring the heavy batter genuinely made her arm hurt.  As I typed that it only now occurred to me I always make a double batch.  That makes the batter heavier.

However, she was a pro at cracking eggs right from the start and loved doing that part.  Back when she couldn’t measure easily, I would measure and she would dump in.  At some point she got interested in  watching cooking shows and one day started telling me about “wet” ingredients and “dry” ingredients and completely cracked me up.

Look at Jessie’s expression. Concentrating on being the pro egg cracker.
Joshua is pretty proud of his finished product.

When our yummy muffins were done we all enjoyed tasting the different varieties. They each took home some of all the muffins, which Jessie’s daddy really appreciated 🙂

That’s making me want some muffins.

Till next week,




Our First Down Syndrome Homeschool Coop Day Learning about the farmer's market and fruits and vegetables.

Our First Down Syndrome Homeschool Coop Day

I wrote earlier about how a simple trial purchase of a Surprise Ride (not an affiliate link) box lead to the idea of starting a small coop of my homeschooling with Down syndrome friends.  After a few months I cancelled our Surprise Ride subscription. Although it turned out not to be affordable for us to continue a monthly subscription at the moment, we enjoyed the boxes we received and it turned out to be a great jumping off point to get us started with our little coop.

The first box I received included a simple game where you move around the board learning about a farmer’s market, a book about Johnny Appleseed, and a small snack.  Some of the kids were more familiar with a farmer’s market than others.  We talked about what you might find at a farmer’s market and pulled from my kitchen items that you might purchase there.

As part of our lesson, we viewed two YouTube videos about a farmer’s market.  Depending on the age range you’re teaching you might choose just one video.  This video showed an indoor farmer’s market and the teacher held up a wide variety of fruit and the spelled word showed on the screen as she said it.  This second video talked about the difference between fruit and vegetables, that fruit keep their seeds in or on them. I learned something new today, I hadn’t realized that was how you could determine the difference.  That explains why tomatoes are considered a fruit, I guess.  Is this something everyone but me already knew?  Did you know bananas had seeds?  I only realized this when a friend of mine developed diverticulitis and had to avoid the banana seeds.

Reading Johnny Appleseed and talking about items you would find at a farmer’s market.
Reading Johnny Appleseed. The kids all took a turn reading too. We had cheeses (evidently some farmers markets sell cheese), fruits, carrots and some jelly I bought from a friend that sells it at a local farmer’s market. We just used what I had on hand. Heather at the last minute helped me out with bringing some apples so we could cut them and talk about the seeds.

We stopped the video when they reached the portion about composting (at around 4:46) as we wanted to stick with the theme we had going and not include too much other information.

I talk regularly to Jessie about how fruit and vegetables are good for you and that your body needs them to be healthy.

The videos about the farmers market and fruit and vegetables was a natural way to lead into learning more about the food groups and why they are all important.  I really wasn’t sure how much she already understood about which were fruit and which were vegetables.  I was pleasantly surprised that she knew which category many of them fell into.

After the video we cut apples and showed the seeds inside.  We talked about the many varieties of apples that there are to enjoy and how some are sweeter and some are more tart.

Jessie really doesn’t like to eat healthy food.  When she was younger it was so hard to get her to eat different textures and things that weren’t her preference and we have let her develop some very bad habits.  She had terrible reflux when she was younger and other tummy issues.  That combined with taste and texture preferences, and all this mama had going on at the time with homeschooling 3 kids then, we got into habits that are now very hard to turn around.

When we are at home I make Jessie take 2 bites of any food I serve even if she doesn’t like it.  I don’t fight this battle when we are out.  Partly because I don’t want to ruin our good time and partly because she sometimes gags and occasionally throws up.  At home,  I make her eat those that she doesn’t like first so she won’t have a lot on her stomach.

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I purchased this kit from Teacher’s Pay Teacher’s for just $5.75 and it’s loaded with great materials to teach the food groups and nutrition.  For this coop day, we are sticking with just classifying fruit and vegetables and later will work on the other food groups.   I used my handy-dandy beloved laminator and laminated everything so it will last through being handled.  I haven’t found a full curriculum in many years that I feel works well for us so I love using resources like this that thoroughly cover just one topic I want to teach Jessie without adding in other information that might be too much.

I handed a card to each of the kids with a fruit or vegetable on them and they would place it on the appropriate food category.  Jessie has always enjoyed that when we do something like this, I make a sound to make it game show like, as a warning when she’s about to make a mistake.  She doesn’t like to get something wrong so this keeps it no-fail and fun.  She giggles at me instead.  The other kids seemed to get a kick out of my sound effects too.  This is another reason why the coop has to stay small.  I’m only willing to make a fool out of myself in this way with a handful of people.

We let the kids help cut the fruit up and enjoyed a healthy snack of apples with peanut butter, bananas and carrots.  Well, some of us enjoyed a healthy snack.  Some will not be outed that are going to require more time and persuasion to develop an appreciation for healthy snacks 🙂   No pictures of this activity because supervising kids with knives has you pretty busy!

When it is my turn to teach again we will move on to other food groups and stick with these same teaching materials from Teachers Pay Teachers.  I will share in future posts how the next coop sessions were different and yet building on the same “healthy” theme.  We are loving our coop!

Till next week,


Teaching our Children with Down Syndrome About God

I don’t get any super mom awards for remembering to do it everyday, but as she’s gotten older, I’ve really been praying for a while about how to help Jessie understand salvation.  I have prayed for each of my children to come to  know and love God.  The hard thing with talking to Jessie about God compared to my other children is how abstract concepts, things she can’t see, are just jibberish to her. 

Jessie is maturing in so many ways.  She continues to learn and grow in all areas of her life.  In other areas of life she has shown that she is very capable of building on already learned concepts, but in this spiritual arena,  I have not been able to explain things in a way she understands.  

During VBS one year,  Jessie went forward when kids were asked if they wanted to talk with our pastor about salvation.  It was clear to Brother Dan and to me that although she wants to understand, she didn’t yet.

Jessie’s understanding of God is very simple.  Although I haven’t felt she was ready to understand deep or more complicated concepts about God, she has for a long time now expressed in her own words that she wants to please God.  Jessie has told me she likes to learn about God.  She has also often mentioned people that we know and will say, “so and so needs God.”  Sometimes she has expressed it so fervently that I’ve wondered if she knows something I don’t.

I had been brushing Jessie’s teeth one night when I asked if she had called a certain friend. When she said yes (I already knew she had) then I asked how many times she had called.  She said once.  I told her I was going to check her phone.  She instantly looked guilty and said, “Don’t check my phone.”  We’ve really been working on her not calling back multiple times when someone doesn’t answer.  Jessie knows she’s only supposed to call once and then wait for her friend to call back if they want to.  And it’s really, really hard for her to be obedient in this area.

If she’s going to grasp what salvation is, she first has to understand what sin is.

I’ve talked with Jessie before about sin, and it was clear at that time that she didn’t really understand.

While I continued brushing her teeth we talked about how it was important to obey and to always tell the truth.  I explained that when she disobeyed mama and when she didn’t tell the truth, it wasn’t just mama to whom she had done something wrong, but she had done something wrong to God too.  

We moved to her bedroom and  continued  her nightly routine.  I put lavender essential oil on some cysts/bumps she gets on her legs, I put some cream on calluses on her feet.  I looked through her phone and asked her a couple of questions.  She blew her nose and then while I was getting her CPAP ready she suddenly said, “It’s hard for me” and she burst into tears.

 I thought she meant it was hard not to keep calling back when her friend didn’t answer, but I asked her to be sure what she meant.  She said, “It’s hard for me to tell the truth.”  I saw that internal struggle all over her sweet face.

Bless that baby.  We all know that sometimes it really is hard to do the right thing.  I knew her statement represented so much.  

There was so much wrapped up in that one statement that encouraged me.  

Clearly she was thinking about what she had done wrong, and she knew it was wrong.  She was also expressing her feelings, that it was a struggle for her to do the right thing, to tell the truth.  It is sometimes hard for Jessie to express her feelings with the right words.  There was so much developmental and spiritual good stuff wrapped up in that one statement.

Before Jessie laid down to go to sleep I took her hand her in mine.  Her hand that has such sweet chubby fingers with little bits of polish left on the nails.  I held her hand and prayed for her.  I let her hear me thank God for her and thank God that he chose me to be her mother.  I told God in her presence how I can’t imagine life without my Jessie.  I prayed that God would help her to be able to obey.  I prayed He would help her to tell the truth even though it was hard.  And silently I prayed He would help Jessie to understand more than what was just said out loud.   

It was in these everyday kind of moments that my two older children came to learn and understand salvation and their need of a savior.  With them it was a gradual understanding too.  It just didn’t seem so hard to explain it in terms that they could understand.  

While she doesn’t yet really comprehend what sin is, I do feel we are making progress for her to begin to understand.   While praying with Jessie I felt this sweet confirmation that God was answering my prayer.  I don’t know the time-table, but I see God at work.  

How sweet it is to know that the mighty God of all things listens to my concerns and cares about them and me.  And you.  



Starting a Down syndrome homeschool coop

The Idea That Turned Into a Down Syndrome Homeschool Coop

I have been feeling that we needed something new in our homeschooling that was fun and fresh.  

When I heard about Surprise Ride from Crystal at Moneysavingmom.com I thought it sounded like just the thing that would be both educational and fun and completely different from anything else we were currently doing.  I hoped it would give Jessie a bite sized amount of information about whatever the subject of the month was, in a way that was fun and might inspire us to want to learn more about it.  

As soon as I dug into the first Surprise Ride box when it arrived, I realized this would be much more fun for her if she had a friend to do the activity with.  With a Surprise Ride subscription you get an activity box once a month.  There is an activity or project of some kind in each box which includes any materials needed.  There is also a book and a small snack.  The activity in our box was about the farmers market and I knew it wouldn’t be nearly as fun with just mom.  This made me think of inviting a friend to do it with us.  

I asked one of my closest friends (who has a son with DS) what she thought of the idea of us getting together a small group to do something like a coop, on a small and manageable scale, as a trial to see how it went. She was all for the idea and we agreed if it didn’t work for our schedule in the future we could discontinue it, but for now it sounded like fun and we thought it could fit into our schedule.   

We both already have a lot of other obligations, so we agreed we should keep it super simple so that it wouldn’t overwhelm us.  We asked two friends to participate with us. 

Our coop consists of 2 boys and 2 girls, all of which have Down syndrome.  Joshua, Isaiah and Jessie are close in age and currently homeschooling.   Ashley has already graduated high school so she is available during the school day to participate.  Although they vary in age, we hope they have enough shared interests and are close enough in age and ability for the materials we are using to be interesting to all of  them.  We’ve only had 2 coop days and so far they all seem to be enjoying it.  

Why a specifically Down syndrome homeschool coop?

We have enjoyed a homeschool coop before as my family is part of a large homeschool group in our area.  When I was homeschooling all three of my kids they participated in a coop one day a week for much of the school year.  This was a huge benefit to them and to me, especially when my older two were in high school. 

As her siblings graduated and Jessie got older, our homeschool group coop wasn’t as good of a fit for her.  As she got older the gap was bigger and bigger between her and her same age peers.  Even though she was very warmly received and made welcome, it wasn’t easy to find classes that were a good fit.  

Jessie is involved in several different activities on a regular basis.  We are so blessed to be in a community that offers many good things for people with disabilities. So much so, that a couple of years ago when our schedule was overcrowded we decided we needed to let something go.  We felt that Special Olympics and her other activities were benefitting her more than coop, so coop had to be the one to go.  At the time, it was a hard decision. We’ve been a part of the same homeschool group for over 15 years (I’m too lazy to actually count how many years, it’s more than 15 🙂  and were very involved during the years I homeschooled my older two.  

After 19 years of homeschooling, what continues to be my favorite thing about homeschooling is the ability to tailor your teaching and schedule to what fits your family, your students and your season of life.

This past spring as I evaluated my commitments I let go of one responsibility I’ve had for a long time.  Eliminating that from my schedule has freed me up to commit to this coop with Jessie.  We’ve been in a bit of a rut in our homeschooling and just needed something new.   I feel this coop has potential to be both educational and fun in a fresh way for Jessie, so I’m glad it was something we could add to our schedule.

Here are some things that are making our coop doable and not too complicated or stressful:

  • We kept it super small.  This makes it easy to coordinate.  Everyone fits around the kitchen table.  
  • The parents stay and this makes enough hands or help for whatever we are doing. It also means each parent knows what we did if they want to build on that lesson at home or when it’s their turn to host.
  • It wouldn’t have to be this way, but we all were already friends.  The moms all know each other well, this makes it easier in my opinion, but wouldn’t be a deal breaker.  
  • We have an equal ratio of boys and girls.  This isn’t essential, but since we kept it so small this means no one is the only boy or girl.  We don’t always have time to socialize after (some have another activity immediately after) but we want that to be a part of the coop as well, them having time to play together.  The activity that is after our coop will be over in  few weeks and allow for some play/fun time.  
  • We alternate each time who hosts and plans the activity.
  • Our coop is just every other week so it isn’t a burden for anyone to plan for.  We start at 1:00 p.m so everyone has already had lunch and it lasts around 2 hours.  We can adjust that in the future if needed.   
  • Whoever hosts in their home plans the activity.  It is at their discretion what to plan.  It can build on something from the previous meeting or stand alone.  

I’ll share more of what we’re doing and the resources we use for our coop in weeks to come.

Hope you’re having a great week!



Two things we are doing to improve Jessie's (our daughter with Down syndrome) conversation skills.

Two Things We Are Doing to Improve Jessie’s Conversation Skills

To varying degrees all people with Down syndrome deal with  communication issues and speech delays.  Some struggle with articulation more than others, but all deal with speech related delays.  

Jessie speaks fairly well.  People who know her really well understand much or most of what she says.  Like many  people with Down syndrome, it requires a little patience to have a conversation with Jessie.  She may use all the right words, but they might be slightly out of order.  She may use most of the right words but leave a little something out.  She finds it frustrating when she can’t get across what it is she has on her mind to say.  

To be completely honest, she drives us all nuts talking about the same things ALL the time.  It is for both her sake and ours that we need to increase the topics that she can talk about.  It would be a completely different situation if I felt that weren’t possible, we would love and accept her exactly as she is.  But she is capable of growing in this area, it just requires some patience and intention on our part.  

She loves to talk with us.  And we sincerely want to talk with her.  It has been an ongoing process since before she could say one word that we have consistently worked with her to increase her ability to communicate and increase the topics that she can communicate about.  What this has looked like at every age has been different, but it is something that has been on our minds from the beginning.  

Some of the reasons at this age we want to increase Jessie’s ability to communicate are:

  • She is very social and loves to be with and talk to people inside and outside of her family.  
  • Other than taking her out to eat, there isn’t one thing in the world that makes Jessie happier than for you to talk with her.
  • Other people are easily bored with the few topics she can talk about so we want to increase, however much we can, what she can talk about. We don’t want it to be that she can only converse if the conversation is about her and her activities.  

Barriers to communication at this age (teenage) and what we are doing to accommodate or improve them:

Jessie processes slower- it takes her a little longer to process what you said, formulate her response and then be able to get it out.  Too often, myself included, we are don’t wait long enough to give her time to respond.  We may smooth over and go to another topic or answer for her.  It is sometimes hard to give her the time she needs, but so worth it when we do.  It’s good for her and it’s good for us.   We need to, and are trying to, purposefully (sometimes painfully) wait for her to answer.  

The topics that she has enough knowledge of to have a conversation about is limited.  She lacks a frame of reference for many things that adults or her typical peers might talk about.  

Rather than all the questions being directed to Jessie about her so that the conversation is all one sided, and let’s be honest, boring and repetitive, Jessie has learned a couple of questions to ask others to help get or keep the conversation going.

Now, we are working on being purposeful about giving her good answers to her questions so she can increase the things she knows about, so she can converse  better.

For Example:   “How is your work going?”  She asks Daddy and her sister, Jordan, this question every time she talks to them.

Instead of responding with “Good, how was your day?” we respond with something specific about our day.  “I had a fun/sweet/hard/ patient today.” or “One of my patients brought me a cake today.”  (Jordan,  PTA)  “Well, I had a problem with the computer today, but it all worked out okay.” or “I walked down the hill to see about something with Mr. Richard today.” (Daddy) These responses  give her some knowledge she didn’t have before to build on later.  She now often asks Daddy how Mr. Richard is doing.    

When talking with her friends on the phone, if I’m nearby I will coach her to ask them what (not how, so she can get a specific answer that might spark further conversation) they’ve been doing that day.

These are just simple examples.  When she was younger we were trying to stretch 3 word sentences to longer sentences.  She does well with that now.  Now, our primary focus is helping her have meaningful conversation.  Primarily, we are doing this by teaching her questions to ask the other person, and when she asks questions we try to give answers that increase her knowledge by baby steps and little bits so she doesn’t get bored but learns something new.

As a side note, I am amazed sometimes at the words Jessie will use in a correct way out of the blue.  She has learned some good vocabulary from of all places, YouTube.  She learned about “wet ingredients” and “dry ingredients” and other cooking related terminology from watching cooking shows.  She has learned about products and techniques about makeup and makeup application as well.  When she was younger she watched videos of how other girls decorated their Barbie House.  Last Christmas we had a party where she and her friends decorated cookies and swapped gifts because she had watched some kids do the same on YouTube.  

Truthfully, she has learned a lot of good and interesting things from YouTube. We have also sometimes been surprised in a less good way from some language she has heard on YouTube.  While it’s been a good tool, it’s something we have to keep a close eye on.  I can’t remember the process but there is a way to filter some of what will come up in search or be displayed.  I can’t remember the steps but found this link that looks helpful .  It won’t keep every negative influence out, but is just one step of the monitoring process.  

I hope you find this helpful.  I hope if you love someone with Down syndrome or another speech delay it will give you an idea of how you might make your conversations with them more enjoyable and at the same time help them learn to communicate better.  

Always thinking and always sharing my thoughts,


p.s.  I had the opportunity to hear James Macdonald speak several years ago.  Here is a link with some of his main ideas.  These really influenced our approach when Jessie was younger.

Mama, Are You Battle Weary?

A couple of weeks ago I described myself to a friend as battle weary.  That day, something that I usually could have let roll off my back just really got to me.  It felt like much bigger of an issue than it really was.  In the big scheme of things, it was just a little thing.   But that day I just didn’t cope with it well.  I just felt tired of coping.

I’ve been a mama for almost 23 years now.   And a mama to a child with special needs for almost 16.  I recognized the feeling.   That feeling of sadness that I knew was out of proportion to the event that set it off.  I’ve learned to recognize the feeling and I’ve learned what usually helps me to deal with it.

You’ve heard the phrase, “the straw that broke the camel’s back”.  That’s almost always the kind of thing that throws me over the edge.  A normal everyday stressor that I don’t react to in my normal way.  It may be related to something I’ve been dealing with for a long time or it may be that I feel I’ve been dealing with a lot of things for a long time.

I just kinda snap.

Not on the outside.   Just on the inside.  

You know that post I wrote a while back, about how Down syndrome doesn’t rule our lives anymore?  Well, 95% of the time that’s really how I feel.   Then, bam.

I’m just so tired of trying to figure things out.

Tired of trying to figure out why my child’s hair is falling out.  Well, I know it’s autoimmune but I mean tired of trying to find time and mental energy to research one more thing.  Tired of trying to keep Jessie from calling people more often than they want her to.  Tired of worrying about how much tv/youtube Jessie watches while I tend to my responsibilities.  Tired of trying to figure out what really is important to teach her in our homeschool.  

Tired.  Just tired.  Physically too, but mostly mentally.  Just so tired of fighting for balance in so many areas.  Battle weary.   On those days it all just feels like I’ve been fighting a lot of things for a long time.  And something happens that feels like the straw that broke the camel’s back.  Like for just a short time I can’t fight anymore.  

I have learned that when I feel this way I need to give myself a break.  

I can’t usually take a break physically but I mentally take a break.  I allow myself to not feel guilty about not dealing well with all the things that are competing for my attention.  I allow myself to feel sad about whatever is bothering me. I remind myself that all those things will be there for me to figure out in a few days.  I allow myself to do less than what is my best in all those mentally exhausting areas briefly while I let my brain take a rest.  

Usually, I am better in a day or two.   Then I can think about all those things without wanting to cry.  

I’m back to feeling like Down syndrome is just a thing to adjust to.  And God will guide us through.  He always has and always will.  

Rest is biblical.  Sometimes the need for rest is physical and sometimes the rest we need is mental.  At least for me it is.  Surely I can’t be the only one.

We put such pressure on ourselves to do all the things well.   Is that realistic?  Or healthy?

Mama, when you’re battle weary, allow yourself to take just a little break so that you can be fit to deal with it all again.  Whatever the issues, they didn’t get where they are in a day and they aren’t gonna get resolved in a day.  

Allow yourself to not feel guilty for taking a couple of mental health days, where you might let your kid off the hook for something that really needs to be dealt with.  You will deal with it; just not today.  

Maybe you need to paint a room or do a DIY or craft project?  Maybe you need to binge watch Netflix (for a day not a year :)) and not feel guilty that your kid is watching tv while you’re doing those things.  Or read a book all day and let the kids eat whatever they can get for themselves?  Whatever is your thing, maybe for a couple of days it isn’t selfish; maybe it’s the thing that helps you get back to the place where you can give again.

I may not be ready to tackle all the things in a couple of days, but when I give myself permission to not deal with them temporarily, they usually feel like things I can deal with again soon.

Today I’m good.  But that day a couple of weeks ago is still fresh enough in my memory that I’m crying as I write this.  I’m not going to feel guilty or weak for having that moment of weakness and neither should you.  

You can be strong and not be strong every minute.  All parenting, and even more so special needs parenting, is a marathon, not a sprint.  I’m convinced that letting yourself be weak for a moment so you can regroup can help you be better equipped to get back in the battle another day.

Battle weary mama, I know how you feel and I’m praying for you.