Alopecia Update (and what we’re trying)

When we saw our pediatrician for Jessie’s annual visit, we talked about Jessie’s Alopecia Areata (hair loss).  He ordered some blood work, to be sure there wasn’t anything else going on with Jessie’s immune system and the blood work came back within normal ranges.  We are relieved to know there isn’t anything more serious going on.  We asked if he knew of anything else we could do, or if he thought visiting the dermatologist again would be of any benefit.  His office made an appointment for us with the dermatologist we had seen once before several years ago.

Revisiting the dermatologist

The doctor reminded us that there is no cure for Alopecia Areata and that it’s possible we will be dealing with this as a life-long condition.  There are treatments we can try that may help her hair regrow, but she might (and likely will with her history of it so far) lose it again and again.

When she examined the patchy bald spots on Jessie’s scalp, Dr. R. pointed out the difference in the skin color on the front part of Jessie’s head versus all the other bald spots.  When she pointed it out, I could see that there was a difference, but it wasn’t something I had noticed or would notice if she hadn’t pointed it out.  All of the spots in other places had a pinker tint to the skin, which she said indicated current inflammation, whereas the front part of her head was a different (not pink) skin tone.

Dr. R.  said because there wasn’t current inflammation on the front part of her scalp, she felt less hopeful that the hair there would re-grow as a result of the steroid treatment she was prescribing.  We felt pretty devastated with this news.  When she saw the looks on our faces, she did follow-up with that it was possible, as the steroid treats the whole body.

We’re Trying Oral Steroids & Using a Topical Steroid

I had asked our pediatrician if oral steroids were an option and he had said not likely, because of the risk of side effects.  Our dermatologist though said this would be short-term use, 4 weeks, and she felt safe about that length of time.

So, we’re giving it a whirl.

I was worried that the oral steroids would affect Jessie’s sleep.  When our oldest was about 7 and took a steroid, I wasn’t sure one of us was coming out of that week alive.   She slept much less than normal that week and had dark circles by week-end and I felt like a crazy mama.  Thankfully, it hasn’t affected Jessie’s sleep much if at all.

She has, however, been hungry almost constantly since day 2. Although Jessie is overweight and I won’t say she eats healthfully, she doesn’t usually snack more than the average person, so constantly saying she’s hungry is out of the norm for her.  The first 4 days she took 5 tablets, then 4 tablets for 4 days and the dose will continue to taper off.  It is my hope that as her dose tapers so will her constant desire to eat 🙂

We are also again using the topical steroid 2 times per day.  I don’t know what form you would say it is in.   It’s not a cream, its wet and comes out in drops.  Jessie complained of the wet feeling.  I wasn’t even sure how to apply it properly.  I’ve started to use a cotton ball which leaves her head less wet feeling and that is less annoying to her.  It’s a 2 weeks on 1 week off regimen.

Natural Remedies We’re Planning to Try

A couple of days before Jessie’s dermatology appointment someone sent me a link about 9 Natural Treatments for Alopecia.  I spent some time yesterday following links in the article and learning more about each of the 9 options listed.  Each of the natural options I’m listing below are from this article by Dr. Axe, Alopecia Areata:  9 Natural Ways to Treat Hair Loss.

I’m going to wait until we have finished the oral steroids before I try anything new.  That will give me time to research a little more and order what I need.  Some of the options are easier for us to try than others. Read the referenced article for yourself, listed below isn’t all of the options, just the ones we are considering trying soon.  We will likely only add one new thing at a time.  I’ll keep you updated as to what seems to help.

Probiotics

Jessie is pretty picky about both taste and texture, so getting most of the probiotic foods in her wouldn’t be easy, but taking a good probiotic would be easy for her, just $$ for mom and dad.  I have been giving her some probiotic gummies I picked up at Wal-Mart for a while and they do help with her sometimes upset tummy but I see from researching there are much better ones out there, and they cost more.

Supplements

Zinc:   I read an article a few months ago about new research where they’re learning how the immune system of a person with Down syndrome is different.  It has been known for a while that it is different, but we’re only beginning to understand how it’s different. I googled around a bit about the immune system and kept reading how important Zinc is to our immune system.  The last time Jessie’s zinc was tested, she wasn’t deficient.  Since she was within the normal range,  I asked her pediatrician and he said supplementing her with 50 mg wouldn’t hurt her, so we decided to add that to the vitamin D she was already taking.

Quercetin reduces inflammation and fights free radical damage and is often used to treat auto immune disorders. I’ve seen free radicals mentioned a lot in reading about Down syndrome.

Ginseng reduces inflammation and boosts immune function.

Lavender and Rosemary essential oils applied to the scalp as directed in above referenced article.  I wondered too, since the article says rosemary oil is also used to treat dandruff and dry scalp, if that might eliminate our need for dandruff shampoo and address that issue in a more natural way.

Those are the natural remedies we’re considering trying soon.

I don’t know about you, but I’ve spent too much time indoors this week, busy with a variety of things including cleaning out our bathroom closet and under the cabinets.  I’m ready for a pool day tomorrow!

Hope y’all are having a great week and enjoying your summer.  Be safe in this crazy heat!

Josette

Living With Down Syndrome: More Alike Than Different?

I’m not sure where it got its start, but More Alike Than Different is a phrase that’s been used in the Down syndrome community for a while now.  It’s also a frequently used hashtag on Instagram.

It has just never rung true for me and our experience with parenting a child with Down syndrome.

Before I’m strung up or stoned, will you hear me out just a minute?

I understand the reasons behind the hashtag, and they’re all good ones, but it isn’t a sentiment that resonates with me.

I agree that many people with Down syndrome have the same wants and desires, hopes and dreams as people without Down syndrome.  But in my experience (and I hear the same from other parents I know) almost everything about parenting a child with Down syndrome is different.  More alike than different just doesn’t feel like an authentic testimony, either for me as a parent or for Jessie.

Why do we assume “different” is bad?  Can’t different simply just mean different?

With my older two children (one boy and one girl) there were great differences in each of them and what parenting each of them required of me.  In the case of our third child with Down syndrome though, the differences were even greater.  Some of the differences have been because of health concerns.  Almost every health concern that happens to people with DS occurs in the rest of the population, some just with greater frequency.  Many of the differences we’ve experienced have been because of the cognitive differences, delays and communication issues.

Per NDSS, The majority of people (95%) with Down syndrome have trisomy 21, which means that extra chromosome is replicated in every cell of the body.  This is different from all other people who don’t have Down syndrome.  Genetically speaking, there’s much about Jessie that is the same as the rest of our family, and there are some things that are different from the rest of us that don’t have Down syndrome.  Why does acknowledging that mean I’m saying something is bad or wrong?

This morning, my phone rang around 1 am.  It was Jessie calling me from her bedroom.  She had started her period while she was sleeping and she was having very bad cramps.  Because she was both tired and in pain, her ability to communicate everything to me wasn’t as good as she usually can.  It took me a few minutes to realize that she wasn’t being obstinate in not answering some of my questions, but that she herself was having a hard time knowing the answers.

This morning as we sat at McDonald’s having breakfast before heading to Cooking Camp, Jessie said to me, “I don’t feeling good last morning.”  Expressing time (this morning, last week, last year) is something Jessie has difficulty with.   And she sometimes puts her words in a sentence out of the typical order or not grammatically correct word choices (don’t feeling good).  My point is, Jessie is 16, and this wouldn’t be a sentence you would hear at that age from a “typical” 16-year-old.

When Jessie tore open her jelly packet she struggled with it, made a sound of exasperation, then was able to get it open on her own.  The fact that this was difficult for her was not a “normal” or “typical” experience, it was different.  So was the fact that as I watched her, I resisted the urge to immediately help her in her difficulty and then felt so proud that she accomplished it on her own.  Yes, we experience those same struggles with our other children, just not over a jelly packet at 16.

If you’re a newer reader to my blog, you might think Jessie is more cognitively affected than she is.  She is very capable.  She learns and grows more independent every single day.  She speaks pretty well, but she thinks with so much more clarity than she can sometimes express.  She reads well.  She struggles the most with certain types of fine motor skills and she has a foot issue (unrelated to DS) that affects her balance even more than the average person with Down syndrome.

In about a year, when Jessie is 18, we will begin the process to become Jessie’s guardians.  While she is so very capable in many ways, she will always need someone to oversee her care and help make medical and financial decisions.  When she out lives us (her parents), her siblings will assume that role.  That is different.  It is not more alike than different.

Different doesn’t infer good or bad, it’s just different. 

A while back, I read this blog post, “On Radical Acceptance (And Not Fixing Your Kid), and it resonated deeply with me. Written by a mom whose child has a different chromosomal abnormality,  I cried when I read the part about “The Button Man” and I sobbed with understanding as I read this:

“Somehow, somewhere, the urge to want to change my kid subsided…Maybe it subsided when I saw all these differently abled people–people in wheelchairs and people who ran, people who ate orally and people fed by gtubes, people who spoke and people who didn’t–and I finally felt in my bones that all of these ways of being were good.  And by good, I don’t just mean, “Hey, it’s all good.”  I mean in that deep affirming way that things are proclaimed good in Genesis.  There is dark, and it is good, and there is light, and it is good, and there is a grown woman who gets around by scooting on her butt and she is good, and here is my daughter, one year old, twelve pounds big, who has just started learning to hold up her head (thanks or possibly no thanks to our tummy time), and she is goodShe is so, so good.

It seems to me that one of the reasons parents use this hashtag is showing that living with a person with Down syndrome is a positive experience.  And I will agree with that all the day long!  But it is different.  Jessie’s life is good, but her life experiences are a lot different than that of my other children.  And, for the most part that isn’t because of any way that she isn’t being included or accepted or supported.

Our Down syndrome group last year bought shirts that say, “Different, not less.”  We didn’t at the time know that was a slogan used for autism awareness, but I like that SO much better than “more alike than different”.  That sentiment much more accurately expresses what I feel is my experience as a parent and how I see Jessie.  Different.  Not less.  We’ll broach the whole subject of “special needs” another time 🙂

We want to be an encouragement to parents who are expecting a child with Down syndrome or have a younger child with DS.  We also want the world to see that our children with Down syndrome aren’t a burden to us.

Sometimes, not in spite of their differences, but because of them, our lives are richer.  Have you never rejoiced in your heart over a jelly packet independently opened or the toilet paper roll replaced?  Well, I have.  That’s just one tiny thing that comes to mind.  Jessie gives me a lot of reasons to be thankful that God allowed me to be her mother.

What if, instead of “more alike than different” we project that different is ok? In fact, different is very, very good.

Josette

If You Struggle With Transitioning to Summer, You’re Not Alone

Every year this happens and I react the same way.  Why does that still take me by surprise?

As the school year ends, all of Jessie’s Special Olympic sports and other activities come to an abrupt stop all at the same time.   She is sad when they end and I’m both sad for her and relieved that there will be a few weeks between these activities and the summer camps (just mornings) she participates in.

For as long as we’ve been homeschooling (forever, now, I think) I’ve always collected in my mind all year long things I’m going to accomplish around the house when the school year is over.  I always at least think it will (and it is after the first 2 weeks) be easier to keep my house reasonably clean.

Those first couple of weeks of summer I completely flounder and can’t decide whether to work or rest/play and don’t feel satisfied no matter what I actually do.  I can’t seem to make myself get fully into any projects and I feel guilty if I just do nothing, which is what I really, really want to do.

During the school year, our days are completely structured around Jessie’s activities and when they suddenly stop, there’s no framework in place.  I find that for those first couple of weeks I want to be a complete slouch and just rest and read and do nothing, but feel guilty to do that.  I partly feel guilty because, hey, the hubby is at work I feel I should be working too. He doesn’t say that, that is something I put on myself.  Secondly I feel guilty because it means Jessie isn’t doing something productive either.

When I’m working on house projects Jessie is on her own and when I’m doing my own thing (reading, etc) Jessie is on her own.  Jessie has some chores, but even with those she has a lot of free time.  On her own = she’s watching videos on her tv or phone.  She plays Barbies a little or her wrestling action figures a little and a plays a wrestling video game.  Most of her time on her own though is with some type of screen.

With my other two kids I restricted the amount of time they could be in front of the tv and they were older by the time cell phones were a thing. If they complained of being bored, I told them I could find them some chores to do, and I meant it.   That usually worked 🙂  There was still occasional whining about that and they too had a transition period before they got into the groove of being able to fill up that free time in a way that didn’t get them into trouble.

I have a harder time though, finding ways Jessie can spend her time besides tv and cell phone that doesn’t require help from me.  Anything else she would enjoy requires me for instruction or help of some kind.  She has her adult coloring books, markers, gel pens and such in her room but she is only content if the tv is going too.

I have taken to telling Jessie if she’s bored (acting whiny and sad about us not going somewhere) I will find her some chores to do.  When she was younger, there were fewer things she could do around the house but now I really can almost always find her a chore she could do.  But it is just different and I struggle with it all in a different way with her.

For this week, the pattern I’ve fallen into has been very little productivity in the early part of the day and then mid-afternoon the guilt kicks me into gear and I get a little something done.  I cleaned Jessie’s bathroom last night at midnight 🙂  I just left the floor for her to sweep today, cause she needs something to do besides tv.

If this year is like the others, in a couple of weeks I’ll sort of find my way into a loose summer routine and still feel guilty though when I take time to just relax.  Why must mamas feel guilty about that?

If you find that the transition from the structure of the school year to the complete freedom of summer isn’t perfectly smooth, I’m right there with ya.  I’m hoping we all get it straightened out soon. If you’ve got tips, please share them!

Talk to you next week,

Josette

PS:  Did you notice that the photo at the top has some brown on the leaves?  You probably did, I did too.  But you know what?  The intracacy of the detail of those blooms are amazing.  Such variety of size of bloom and colors. The green of the leaves is so lush.  Yep, there’s a little bit of brown on them.  And I will soon cut that brown part of the leaf off.  Even though there is some imperfection there, this is my first hydrangea and I love it 🙂  It isn’t perfect, but I think it’s beautiful.

Conversations With Jessie

Kids say the darndest things. Without even meaning to be, they’re hilariously funny, sometimes profoundly insightful, and other times so sweet it will make you cry.  Occasionally, it’s all 3 in one sentence.  Kids.

There was a time when Evan was around 3 or 4, we made a rule that he couldn’t say ANYTHING about how ANYONE looked without running it by us first.  Whisper it to mama first was the rule.  Yes, in complete innocence on his part, he had embarrassed us on more than one occasion.

Times have changed.  With Jordan and Evan I used to jot things down on slips of paper or the back of an envelope and hope to get it transferred to a calendar or something more permanent.  These days, I’ve started making notes in my phone when Jessie says something I want to remember.

Here are some of the recent conversations I remembered to take note of.  Each of these made me giggle or made my nose itch (how I feel right before I have to cry).  I hope they add a little something to your day too.

Sometimes funny:

Lots of times while we’re in different parts of the house, I call Jessie on the phone rather than go to her room. I call to tell her supper is ready, or get ready to go somewhere, get ready for bed, etc.  Recently when I called Jessie she answered with, “This is Jessie; may I help you?” 😂

I had a good laugh (which she appreciated greatly), and since she was rewarded with laughter, she has started answering her phone in similar ways more often.

🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿

Background information you need to know in order to enjoy the full benefit of her response to my question:  Jessie has always been upset by the sound of a baby crying. Partly because it’s loud and partly because she knows it’s a distress signal, it upsets her. When she was younger and in the church nursery, if a baby started crying she would cry too.  A crying baby sets off alarm bells inside all of us, she just can’t ever cover up her emotions.  She handles it somewhat better now that she’s older, but it is still unsettling to her and she can’t handle it for very long before she has to escape.  Now back to our story….

We were on our way to pick Jordan up, then going together to visit a friend of ours at the hospital who just had a baby.  Jessie asked me if Jordan (her older sister) was pregnant.  I answered no and then asked if she wanted her to be. She replied with a yes. I asked Jessie, “If the baby cries, will you hold her and comfort her?” We could see multiple emotions cross her face then she replied dead seriously with, “Just a little bit.”  Gotcha, Jessie.  I feel the same.

🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿🌿

Jessie watches WWE wrestling every week (sometimes daily) and the girl knows her moves, the  real ones.  The moves have names and she knows those too.  She loves to wrestle with her dad and they do it often.  There’s always lots of smack talk before and during.  Sometimes when they talk on the phone they’ll promise each other a beat down.  Often when they’re wrestling, it sounds like there is a real killin’ going on in there.  And, sometimes she tries to get me involved to help her.

One night she was wrestling with daddy and he wanted her to stop. She told me to “Kick him!” and  told him, “Come onnn, let us have some fun!”  (She wasn’t really wanting to hurt her daddy, it’s just smack talk.)

Profoundly insightful:

This conversation hits every category. It is both insightful and sweet and at the time was a little sad. Jessie has adjusted pretty well to her sister getting married and her brother working out of town. Sometimes though, she really misses them (the way things were when they lived at home), especially Jordan.  Before Jordan got married, they slept together every night.

Jessie had looked at a picture I have pinned on a board in our kitchen. A few minutes later when we were in the car she mentioned the photo. She said the photo was when we took daddy to the airport. Talking about her sister she said, “This was when her name was Hall. She can change her name (back to Hall), she can be friends with him (with Josh instead of being married to him).”  She loves Josh to pieces, but she still knows he’s the reason why Jordan doesn’t live here.  Her fix:  they can just be friends.

Jordan and Josh with Jessie at a special event recently.

Sometimes, when she spends time with Jordan, instead of feeling satisfied with the time they had together, she will be sad when they part and go to different homes. For me, that happens less often now than when she was first married, but I completely understand how she feels.  Bless her bones.

So sweet:

Often I tell Jessie, especially at bedtime, that I thank God for her and that I’m so glad God gave her to me.  I tell her that I’m so glad she’s my girl and not someone else’s.  I tell her I can’t imagine what I would do without her.  I’ve told all 3 of my kids these things.  It’s important for our kids to know we love them unconditionally, exactly the way God made them.

It took me a minute to figure out what she was trying to say. She got her words all jumbled up out-of-order, which happens sometimes.  We were crossing the parking lot, meeting friends at a restaurant and I was holding her hand.  Not for safety, because we’re mostly past that, but I often hold her hand when getting out of the car and going in somewhere, just habit I guess.  And we both enjoy it.  Sometimes we hold hands when we’re driving down the road too.  Anyway, although her words were out of order, she was trying to say the same to me, that she’s so glad God gave me to her and that she is thankful to  God for me.  

I would learn to accept it if she couldn’t communicate in this way, but I’m so grateful that she can communicate not just her needs, but her thoughts, sweet and otherwise.

Jessie still has some issues communicating, but since I’m with her all the time, I understand most everything she says these days.  I remember though, when she was young, and we had no clue how much she would or wouldn’t progress with speech.  We didn’t always know what she was thinking.

When she was about 6 or so, often at bedtime it would be very clear that she was thinking about things from her day or wondering about the next one.  It became more and more clear that she was thinking about things in her own head all the time, whether she could express her thoughts or not.  Even though she couldn’t always perfectly verbalize her thoughts, it gave me such hope for the future that I could tell she was always busily thinking.

Jessie brings me so much joy.  I hope in sharing her with you, you get just a little bit of that too.

Till next week friends,

Josette

Our Journey to Becoming Accidental Unschoolers

In the same way that The Pioneer Woman, (Ree Drummond), calls herself an “accidental country girl”, I think we have, with Jessie, become accidental unschoolers.

If you aren’t a homeschooler yourself, you might not know what an “unschooler” is.   Even amongst homeschoolers it isn’t always defined the same way.  For the most part though, it probably means you don’t use a full, prepackaged curriculum (we don’t) and often it also means that what you concentrate on is somewhat student lead (according to what their interests are).

***this post contains affiliate links – if you purchase through my links I will receive a small ad fee at no additional cost to you. ***

When I was homeschooling my older two kids, we would not have been considered unschoolers.  We used a variety of curriculum that I put together, but we did use formal curriculum that followed a typical “preparing for college” way of schooling.  We followed a schedule (mostly) and if we didn’t complete the year’s work (too many extra-curricular activities) before our last “official” school day, we would work into the summer to catch up.  We weren’t super high achievers or extreme slackers.   We were, I think, kinda your average, typical homeschoolers.

Initially, we came to homeschool Jessie, who has Down syndrome,  for most of the same reasons we homeschooled our other kids and some reasons that were a little different.  I plan to share more in a future post about factors we considered in deciding to homeschool and the resources I found helpful in the early years.

Jessie went to preschool for 2 years when she was 4 and 5.  The first year her small class consisted of only kids with special needs and the second year was 1/2 kids with special needs, 1/2 “typical” students.  It was a good experience; there was nothing negative (other than being sick a lot the 2nd year) about her preschool time, but it did help confirm that homeschooling was the right route for us.

Fairly early on, I felt that I wanted us to follow whatever seemed to be OUR best path in homeschooling, whether that was or wasn’t what is typically taught in whatever grade she’s in.  Typical homeschooler way of thinking 🙂  It was helpful that I had already homeschooled one kid who required me to think outside of the box.  I tend to speak in emojis a lot in texting these days, and my mind just went to all the emojis I would use after that last sentence (imagine laughing till you cry emoji and wide eyed emoji here)!

We used an all in one adapted curriculum for kindergarten. After kindergarten, each year I pulled together a variety of sources to teach from. For quite a few years now we haven’t used much regular curriculum at all.

Jessie relatively easily learned her alphabet and letter sounds by about age 4.  She learned her colors and numbers and began to sight read by around 5.  She learned her letter sounds long (years) before she was ready to blend them into words.  I mostly followed the way of teaching sight reading first, then progressing to read phonetically, as is laid out in Teaching Reading to Children With Down Syndrome.  This is a very good resource for teaching reading to a person with DS at any age.  Later, Natalie Hale taught at one of our DS group meetings.  Although I have not read this book, based on having learned from her, I am certain that her book,  Whole Child Reading: A Quick Start Guide to Teaching Students With Down Syndrome and Other Developmental Delays would be good as well.   Jessie was reading pretty well by the time she spoke to our group or I would have bought her book then.

In the early homeschooling years we concentrated heavily on reading above all else, other than your normal everyday life stuff.  I wanted Jessie to read well, and made my efforts toward that end top priority.  If you can read well, other knowledge is accessible to you.  We did some math, she learned about her body and health.  In the earliest grades we did more of what is considered typical school stuff, just not as much of it and not at the typical pace.

I haven’t done any kind of testing to know what her reading grade level is, but Jessie reads well, what I think is really well. Her comprehension though is a good bit behind her reading ability.  She can read many things that she might not understand.  If it’s a subject she finds extremely interesting (all things WWE wrestling) she is more motivated to understand more complicated words or concepts.  With life experience and continuing to read though, I see her comprehension growing, just slowly.

Jessie’s in the 9th grade now, but she isn’t doing typical 9th grade work.  As she got older, what was usually being taught in her grade just weren’t things that were going to be the most helpful for her over the course of the rest of her life.  Over time, our schooling evolved into what I consider more like unschooling.

I don’t think Jessie is ever going to “typical” college.  I don’t think who our past presidents were, or a study of  history, is ever going to be meaningful for her.  She is capable of learning those things, but I would rather concentrate our efforts in areas that will serve her better.

We work on reading and spelling (in a chill kind of way) and don’t study grammar.   We study in science mostly what seems will have interest or benefit to her in her life.  We prioritize time for her to be active, physically and socially, in Special Olympics and other activities over a heavy emphasis in academics.  I am purposeful to notice any things that happen in everyday life that present opportunities to learn.  We focus a lot on life skills.

As for life skills, what do you need to know how to do in order to live as independently as possible?  It isn’t really our goal that Jessie live on her own, but we want her to be able to take care of : her own body (as much as possible), her own needs (food, house cleaning, laundry), relationships (family and friends, communicating well ) as much as is possible.

If you caught on to my use of “as much as is possible”, that’s really our goal.  In all things, as much as is possible. There’s no exact fixed end in mind.  Jessie will be, as we all are, a life-long learner.  We will just keep working, learning and improving in every area.  When she graduates (she wants to in the same way her siblings did) the only thing that will change is we won’t  report grades or attendance or be part of a cover school.

This way of thinking and feeling and living happened very gradually.  I don’t think we’re short-changing Jessie in any way.  She is smart, capable, learning and happy.  While some might feel our way of doing things isn’t “doing enough”, I find everything about our current lifetstyle to be so freeing and although we have our moments (as everyone does!) really joyful.  I am so grateful to God and my husband for making it possible for me to be with Jessie and enjoy her every day.

Not everyone who homeschools their child with Down syndrome feels the same, so please don’t assume I’m speaking for any other families or other homeschoolers.  I know there are families homeschooling their child with Down syndrome who use a more structured approach and teach more subjects than we do.  It works well for them.  This is just what we do, and it’s working for us.

Each of my children have changed me.  God has used each of them in different ways to grow me and teach me, both practically and spiritually.   Parenting Jessie has taught me to slow down and smell the roses, and then smell them again.

I hope you’re having a great week, smelling all the roses, and thanking God for all the good things.

Till next week friends,

Josette

Using Phone Alarm and Timers to Keep Jessie On Track

Currently, the clock app on Jessie’s iPhone is my favorite tool.  It is definitely helping keep Jessie out of trouble and reducing my stress level.  We need both of those things to happen 🙂  While having a phone of her own has been a huge distraction, it has also given her independence and been used as a helpful tool.

I’ve used timers over the years for myself and all of the kids in a variety of ways.  In recent weeks we’ve put to good use both her iPhone alarm clock and timer in several helpful ways.

Jessie doesn’t have a very good concept of how much time has passed. When we need to get dressed and ready to go somewhere, telling her you can watch tv a “few more minutes” and then get dressed just doesn’t mean much to her.

She will often say, “I’ll be ready in 15 or 30 minutes”, when really we’re leaving in five minutes.  In addition to helping us get out of the house, I’m hopeful that over time using the timer for varying amounts of time will help her have a better idea of how long 5 minutes or 15 minutes etc., actually is.

In addition to her lack of concept of time, she would just rather be watching videos, coloring, or playing until the very last free minute. I would tell her to get ready and then once I’m ready would find that she wasn’t.  For a while,  this was causing us a lot of stress as we then had to really hustle to get out the door on time.

In addition to using these tools, I did one time make her miss going to church when there was someone she could stay home with.  Along with the threat of missing out on something, we’ve stepped up our use of alarms and timers and it’s helping a lot.

Ways we use the timer and phone alarm:

To wake up in the morning:

  • As part of our bedtime routine, we discuss the plans for the next day and set her alarms.  If she already knows the plans for the next day, often she has set them on her own. She leaves some preset that she just has to turn on.
  • Jessie sets her alarm for the time to wake up. THEN, she sets a second alarm for 30 minutes later. She can lay in her bed and watch a video until the 2nd alarm goes off, then she makes her bed (she started this on her own recently!) and comes to the kitchen to make her breakfast.

Because we homeschool, this system works for us.  If she had to be up super early, she wouldn’t have as much time to watch a video.  She does still watch a video most days for a shorter time even if she has to get up early (which isn’t often).  She absolutely can get up and get ready without the video but this gives her a minute to shake the fog and be more alert when her feet hit the floor.

Transitioning from one activity to another:

Jessie is grumpy about transitioning from her free time to whatever is next. I go in her room and tell her she has x minutes. Often I give her 15 minutes. She either sets an alarm for 15 minutes later (I tell her what time to set the alarm) or sets a timer for 15 minutes. Most of the time this helps her transition more cheerfully to the next (less fun) activity.

Taking a break from a work activity without “forgetting” to start back:

If she has several chores to do that require standing, bending etc, she can’t do that for long without needing a break.  We are working on this (that’s another post) but for now, she does some chores then she can set a timer for a 15 or 30 minute break, then finish whatever she needs to do.

Doing an activity for a set amount of time:

If Jessie’s room has gotten really out of control, it feels overwhelming to her to tell her to clean it all on her own.  But, if I tell her to set a timer and turn on her music or video and clean her room for 30 minutes, that feels much less overwhelming.  Sometimes, when the timer goes off if she isn’t finished she will keep working.

I use this for other work type activities too.

Help us get out of the house on time:

On swim practice days she sets an alarm for 12:20, which gives her 25 minutes before time to leave our house. When her alarm goes off she puts on her swim suit, brings me a brush and pony tail to put her hair up and puts on her shoes. Ideally, she also brushes her teeth.

Setting an alarm for the time she needs to stop doing whatever else and get ready has been such a huge help.

We don’t have a perfect system and we do not have it all figured out but this is a tool that has been really helpful in making things run more smoothly.  Yes, I could just make her do these things, but this makes her much more compliant without as much nagging or fussing and I’m a fan of that.

I’ve had a chance to spend time with friends this week and bought some pretty new things at a garden center today.  I’m having a great week and hope the same for you!

Till next week friends,

Josette

A Day With Friends

Jessie had wanted to get together with some friends. We chose this week because her friend Gracie was out for spring break. It’s not that often that I let her have more than one friend over at a time, so this was a real treat for her.

These. Girls. They’re a mess. I’m so grateful for the friendships Jessie has and how they continue to blossom into something beautiful.

About an hour before we met for lunch, I had gotten the news that we owe the IRS. It could be worse, but to us it’s a lot of money. It was weighing on me when we met at Chick Fil A to start our “girl’s day” as Jessie says.

I think it’s every day, but I’m not sure, that each employee taking orders can choose someone to bless with an act of kindness, a free meal. Jessie and I have been the recipients of this kindness one other time.

Today, there were 5 of us, and we were all treated to lunch! It couldn’t have happened on a better day. I had been looking at my bank account online right before we arrived and thinking about the whole tax thing. This random act of kindness just felt like a hug from God, a confirmation that he sees, he knows.

After lunch, we headed back to our house for a few hours.

Jessie has this game she has played with her dad (and sometimes her brother) ever since she was a toddler. Sometimes she goes in the closet, but most often she gets one of them into our walk in closet and turns the light off and cackles and cackles. It doesn’t happen quite as often now,  but it used to be a daily game they played.  Daddy makes a lot of fuss about, “Let me outta here!” and the like. The banter and negotiations go on for a while before she lets him out. It sounds a lot like the smack talk from the wrestling Jessie so loves to watch.

Well, Gracie was not fond of being in the closet with the light out. Jessie has done this once before, she always thinks it will be fun, but her friends think not so much. I think this time Jessie understood (afterward) that it really did upset Gracie and knows now that daddy is the only one she can play this game with. I know if tables were turned, and she were at a friend’s house, and hadn’t been there a lot, she wouldn’t think it was fun either. Sigh. Hopefully, she understands this now.

The girls just couldn’t get into a groove at first. Some wanted a movie; some wanted a tv show. Two of them wanted to sit in the only chair in Jessie’s room rather than on the bed. (The chair is more comfy and closer to the tv for tv watching.)  I suggested they could be more comfortable in the living room, but they wanted to watch in her room.  They were watching tv but seemed a little bored with it. I offered suggestions of games they could play but every suggestion I made was shot down.

After I helped with negotiations, the girls settled on a show, seating arrangements, and had something to color while watching. I think they had all seen the show before and were a little bored honestly. Once they had something to color while they watched, they chatted with the tv going in the background and had a good time until time to eat and go to church.

I share these details because I think it’s important in the conversations about Down syndrome that we be honest  These are NORMAL situations, but if we don’t share them it can look to other parents in the same phase that we don’t have any struggles.  It isn’t all just about Down syndrome either; I remember advising my older two with friend relationships, it just happened on a little different time line.  I see Jessie having the maturity to maintain friendships now, with a little parental oversight to help with compromises and negotiations over where to sit and what to watch 🙂

 

At church I was filling in as teacher for a friend. My preferred way to do the lesson is to go around the room and each teen read a portion of the scripture.

We were having a lesson from Luke 5 where a man’s friends carry him to Jesus. Because there’s a crowd, they lower him through the roof of the house, believing if they can get him to Jesus, he’ll be healed. Part of what we talked about was that friends help friends get to Jesus.

One of the guys in the class helped Gracie find the verse she was going to read.  I had helped Ashley find hers.  Jessie likes using the Bible app on her phone as it is easy for her to find the verse she’s looking for.

These 3 girls were in the class with other kids around their age. They each read a verse from our lesson, just like everyone else. Something about that just warmed my heart in a way that stayed with me the rest of the night.  I think some of the other teens might have been surprised that the 3 girls could all read so well.

At the end of class when I asked if any of the students would like to pray for the requests we had talked about, Jessie volunteered. Most kids in her class feel self-conscious about praying in the group but she doesn’t seem to.

As I reflect on this day with these three girls. I am thankful for many things.

Jessie’s friendships

  • I’m thankful Jessie has good friends. It has been a challenge to get to this point and I’m SO grateful for where we are now.
  • I’m thankful for the ways I see her continuing to mature to be a better friend. A couple of years ago, she would have struggled with the compromises I saw her make today without complaint. She understands that to be a good friend that’s what you have to do.

Jessie’s grateful heart

She thanked me for being a good hostess 😊. She said in roundabout ways that she appreciated having her friends over and the little ways I accommodated all of them. She appreciated that I took them to lunch, made food for supper that they liked and that I had bought and made them pink lemonade.

She has such a tender and grateful heart and that makes this mama really happy.

Jessie’s prayers

Almost every time she prays, she prays for people to come to know God. She says they need God. It doesn’t seem perfunctory, it seems to come from a place of understanding. I’m thankful for the simple and heartfelt way she prays for what people need most…to know God.

This week, let’s remember to be like the fellas from the Bible story and be confident about where all true healing comes from.   They knew Jesus was the answer and they helped their friend get to him.  After their friend was healed it says “And amazement took hold on all, and they glorified God.”

And like Jessie, let’s be grateful for every little thing.

Till next week friends,

Josette

On This World Down Syndrome Day; Hope!

World Down Syndrome Day is a day set aside to raise public awareness of Down syndrome.  It  is celebrated 3/21, because Down syndrome is caused by having 3 copies (rather than the usual pair) of the 21st chromosome.

For parents who will in the future receive the diagnosis that their child has Down syndrome, it is so important that the “awareness” shared is a more complete picture of what it is like to have a child with Down syndrome, rather than just the cold medical facts many parents are presented with.

Parents desperately want to know if their family is going to be okay.  I want to share with you that our family is more than okay! As I gave a lot of thought to what I wanted to write for World Down Syndrome Day, I knew what new parents and family members need most when their baby is born with Down syndrome is HOPE.

Sixteen years ago, when our third baby was born we didn’t really know what Down syndrome was. When we learned shortly after birth that the doctors were pretty sure she had Down syndrome, we had no idea what that meant for our family.

My husband especially felt blind-sided and grieved.  Even early on, once we got the diagnosis,  I could see that God had been preparing me for what was to come.  Even in our fears in those early days, it was so clear to us that Jessie was meant to be here.

If you or someone you love has recently found that their baby has Down syndrome I want to address the major fears we had at Jessie’s birth and the way they have worked out.

Health Concerns

There are some pretty scary sounding possibilities that you are faced with when you receive the diagnosis.  With my other two kids, most of those things could happen to them at some point in their lifetime, but I wasn’t made to consider that when they were newborns.

The way I came to view this was like the pamphlet you receive from the pharmacy when you get a new prescription.  Any of those side effects could possibly happen to you, BUT, no one person experiences all of the possible side effects.  The same is true with Down syndrome.

Your child/loved one could experience any of those health concerns but will not experience all of them.

Jessie was born with two heart defects, ASD and VSD. Her heart defects  were diagnosed at 2 weeks and she had open heart surgery at 3 months old. It was a struggle for her to gain weight until she had heart surgery.  Those weeks before heart surgery were emotionally and physically draining as we tried hard to help her gain weight and anticipated heart surgery.  While they affected her before surgery, hers were the easiest kind of heart defects to repair surgically.  She came through open heart surgery like a champ.  Her heart is healthy now, and she’s otherwise been mostly healthy.

Jessie had two sets of ear tubes (I mean, my son without DS had one set), she has not had any hearing loss.  She had eye muscle surgery (elementary age) and wears glasses.

Will she be able to feed herself and behave in a restaurant?

This seems so silly to me now, seriously, so please don’t judge me to be crazy.  It shows my complete ignorance of Down syndrome at the time. You might rightly decide we think too highly of eating out if this was one of my first thoughts.  Of all the possible questions on my mind, one of the first things I wondered was whether our child would be able to function independently enough to feed herself.  I wondered if she would behave well enough for our family to eat out in restaurants.

She learned to feed herself at slightly behind the age of other “typical” babies. Not only can she feed herself, she can make herself biscuits in the microwave for breakfast, and recently made sandwiches for herself, her dad and me after he and I had been out doing yard work.  She would rather watch tv or play video games but she sometimes helps me bake.  She has chores, earns an allowance, and is pretty independent in many ways around the house.

She has eaten in restaurants almost from birth 🙂 She was taught to behave and was disciplined when needed.  She behaved better than most kids her age when in restaurants as a baby and toddler.  Although sassy, she is  kind, thoughtful, and very  appreciative.  She was taught to be this way in the same way her two siblings were.

How will our other two children be affected?  Will they still be able to do extra curricular activities?

I worried how our other two children would be affected.  Our oldest had just turned 7 and was starting gymnastics. They both played t-ball.   I wondered if Jessie would have health concerns or other factors that would restrict our family activities.

Our other children have been affected, but mostly in positive ways.

Jessie had physical, occupational and speech therapies in the first few years of her life. That was a challenge for me as a mom of 3 and homeschooling.  But, it helped Jessie, we made it through, and it wasn’t an issue for my other kids at all. They enjoyed the therapists that came to our home at first. Sometimes they were interested and helpful; other times they went off to play.

Before Jessie’s heart surgery, we were under some stress trying to help Jessie gain weight.  This did feel like a stressful time in some ways for all of us, but lasted a short time.  The other more minor health concerns didn’t drastically affect our other children.  We did have to make some trips for check ups a few hours away, but they kinda enjoyed the day trips. Parents, not so much, but the kids just watched videos and got to eat out.

Because of their exposure to all the therapies Jessie had, our oldest daughter later decided to become a PTA (Physical Therapist Assistant). She decided not to work in pediatrics; but she loves her job as a PTA. This is a direct result of the positive impact she saw the therapists have on her sister and our family.

Our older two kids weren’t restricted in participating in any of their activities because of Jessie having Down syndrome.  Being the third kid, when Jessie was little she was plopped in a stroller and drug everywhere we needed to go.  T-ball, softball, baseball, dance, gymnastics, football, soccer…they did it all and she was along for the ride.  Once she was older she was cheering for them.  When she was old enough to participate in gymnastics and then Miracle League baseball and  Special Olympics they were cheering for her.

How our other kids were affected in positive ways:

Our kids at a young age were around not just Jessie, but other kids with Down syndrome and other disabilities.  They learned that different isn’t bad, it’s just different.  They saw Jessie as their dearly loved baby sister.  They had anticipated her birth and loved her before she was born.  She needed extra help sometimes and they were happy to give it. With or without a disability, that’s what you do for your sister.

They volunteered with Miracle League and helped with me with mailings for our Down syndrome group or whatever was needed.  They learned to serve others through these activities and other volunteer projects that weren’t disability related.  It was all good for them.

Yes, there were times it was a little hard for them.  In the end, even those hard things served them well.  God can use all things for our good and will for those who belong to him.

Those two kids that were 7 and 5 when Jessie was born are now 23 and 21.  Having a sister with Down syndrome helped them to become kind, compassionate, and patient.

We all thank God for Jessie and can’t imagine our family any other way.

If you have a baby with Down syndrome, you will one day encourage another family.  Your specific experiences will be different.  The health concerns or level of difficulty might not be the same.  But one day you’ll look back and won’t be able to imagine that your life had gone any other way.  And then you’ll tell some other mama that she can have HOPE.

Happy World Down Syndrome Day, ya’ll.  Wear some crazy socks. High five or hug someone with Down syndrome.  Hug a mama whose kid has Down syndrome.

This year,  World Down Syndrome Day coincides with our Special Olympic Track and Field Day, so we will be hollerin’ like a bunch of lunatics at our kids and friends that are racing.  Good times.

Till next week friends,

Josette

PS: If you want more info about Down syndrome there’s a lot of good stuff to be found on the NDSS (National Down Syndrome Society) website and NDSC (National Down Syndrome Congress).

Talking To Our Daughter With Down Syndrome About Death

Someone very special to Jessie died this week.

This is the first time someone Jessie really cares about and feels close to has died since she’s matured enough to have any understanding of death. (Although my brother died recently she didn’t know him well.)

Once a month, Jessie has a fun night at a local church (Calvary Baptist Church) that provides a program for kids with special needs. Jessie really enjoys it and looks forward to it.  Jay and I look forward to getting a date night while knowing Jessie is in good hands.  This is where Jessie met Corey.  When I picked Jessie up that evening her face was red and she was hot from playing basketball for close to an hour.  That isn’t like Jessie at all!

Corey was the reason.  He had played basketball with her for nearly an hour and talked to her the whole time.  Taking the time to talk to Jessie and listen to her is her love language.   After this night, Corey became the topic of conversation in our home for a long time to come.  When he was well enough, he would be there every month when Jessie attended on Thursday nights.  From the first night, Jessie couldn’t stop talking about Corey.

I later learned that Corey had cystic fibrosis and had been sick throughout much of his life and  he’d had a double lung transplant.  When he was well though, he volunteered at his church.

Jessie friend requested him on facebook and would send him facebook messages.  Then she got his phone number.  (picture intense pain emoji face here ) Jessie talked and talked and talked about Corey.  She developed quite a crush on him.

For many months I felt like I continually said, “You’re too young to have a boyfriend.  He’s too old for you.  He’s your friend.”  Eventually, we got to a good place where she enjoyed his friendship and could appreciate and be happy with it for what it was.

Jessie, Corey, and Joshua at Joy Prom 2016

When my oldest daughter, Jordan, got married, she and her husband started attending the same church as Corey.  Her husband Josh played softball with the church and we would sit with Corey at all the softball games. It was at softball games that  we all got to know him a little better.   He was someone that our whole family came to know and care about because of his initial kindness toward our Jessie.

Corey and Joshua at Joy Prom 2017. Mrs. Emily went and found Corey so he could escort her through the cheering crowd as they entered the prom. Such a sweet memory for us all.

When he was sick in the hospital on two different occasions for several months each time, we prayed for him regularly.   One of those those times he had ANOTHER double lung transplant.  He was one sick fella for a long time.  I worried at times how we would handle explaining it to Jessie if he died and was concerned for how sad I knew she would be.

And now that time is here.

Because this situation was personal to Jessie, and she really cared about what happened to Corey, it gave me the opportunity to explain spiritual truths to her when she was really listening.   I used the simplest terms I could think of.

I told Jessie that Corey had died and asked if she knew what that meant and she said no.   I explained that when people die they aren’t here with us, they go somewhere else and we won’t see them anymore.  She had already started to cry and the crying got more intense.  I told her they either go somewhere really good to be with God if they love God or they go somewhere bad.  (Although I didn’t elaborate on the somewhere bad, Jessie understands enough that I felt it was important for her to know not everyone goes to heaven.)  I reminded  Jessie that we knew Corey loved God, so he was in heaven with God and would be with him forever.

Jessie knew that Corey had been in the hospital for several months.  She knew he had a hard time breathing.  I tried to find an example she could relate to, like when she was swimming real hard and felt she couldn’t catch her breath.  I explained to her Corey had been feeling like that for a long time and he won’t ever feel that way again.

Jessie is genuinely happy for Corey that he won’t ever feel bad anymore and equally sad that she won’t see him.

For the two days since we had this talk, during the day she has mentioned Corey, and she has wanted to tell a couple of people that her friend died.    I’ve seen for years now that like the rest of us, Jessie thinks things over at the end of the day as she gets ready to go sleep. She hasn’t shown a lot of sadness during the day but at bedtime when she’s tired she feels more emotional and has cried.

Jessie doesn’t understand death, or heaven, or God at the same level another 16 year old would but I think she understands enough to be of comfort to her.  Maybe she will or won’t come to understand with greater clarity later.  All people with Down syndrome aren’t the same, of course, so another might be able to understand more than Jessie and some might understand less.

Jessie understands these simple truths:

She knows she won’t see Corey anymore and that she will miss him.  I think she really does understand she won’t ever see him again (before heaven).

She knows that because Corey loved God he will get to be with him forever.  She knows that to be a good thing.

She knows that things will only ever be good for Corey from now on. He won’t struggle with breathing anymore.

Although these truths she understands are very simple, sometimes I envy her simple way of looking at things.

The last several days I’ve seen a lot of love expressed toward Corey on facebook after his passing.  Clearly, he was a very special young man loved by many.   When we had visited our our daughter’s  church (Corey’s too) I told the pastor our Jessie had a crush on Corey.  The pastor said, “We all have a crush on Corey!” and it seems to be true in such a sweet way.

Our family is thankful for the friendship Jessie had with Corey.  We are glad for the short time we got to know him.  Corey was the first person I ever played  on Words With Friends.   It’s a simple thing, but I’ll miss playing him and him beating me.

Josette

 

DS Coop: Exercise Class and Making Smoothies

Our first Down syndrome coop day started off with learning about food groups and healthy food choices, then the next coop we made muffins and continued learning about healthy food choices.

Food choices and healthy choices in general are something Jessie and I talk about regularly now.   Although I haven’t seen drastic changes in food choices, I see that Jessie is understanding better what food choices are healthier than others and which contain a lot of sugar.  She commented the other day that pizza was carbs 🙂

On this coop day, we learned some simple exercises and made healthy smoothies.  They also wrote their smoothie recipe on a note card so they could make it again at home.  They thought it was all fun, not too much like school work at all 🙂

First, Heather talked to the students briefly about muscles and used this book, Me and My Body, and showed them a picture of muscles on the inside of their body.  She talked very simply about “resistance” and how that works your muscles.

Ashley getting a feel for what resistance means.

Heather had put together a few simple to perform exercises using 2 lb weights and two types of resistance bands, like these with handles and some without.  The exercises were simple yet effective.

Heather helping Joshua keep good form.  He got the hang of it quick.  

Then he was able to do the exercise perfectly by himself.

Heather demonstrated the next exercise for Joshua. 

He thought this was pretty fun.

I took some videos that are so stinkin’ cute but wasn’t able to load them.  Evidently, the best way is to load them to YouTube first and I haven’t learned all that yet.  Maybe I will be able to add them later, I had so hoped I would be able to share them.

After they did the exercises Heather had for them, they did a short routine with  this super cool video  by DSA (Down Syndrome Alabama).  This video is just under 2 minutes and demonstrates a fun, brief aerobic workout  adapted for all fitness levels, including someone remaining seated.

Ashley was recovering from a recent surgery so she didn’t participate in the exercises today.  Jessie, well, she just wanted to do the routine seated.

Heather had a great variety of smoothie ingredients.  Several types of fruit, almond milk and yogurt, peanut butter, kale, flax seed, and honey to sweeten.

Jessie’s favorite part for sure was the smoothies!  Each person was able to choose their ingredients.  Then Heather wrote the recipe down on the white board and each student copied it onto their own 3 x 5 card so they could make the same smoothie recipe again at home.  Jessie doesn’t like a wide variety of fruit and is really picky about texture, so she kept her recipe pretty simple.  Some of the others had a wider variety.

Jessie enjoyed getting to mostly make the smoothie herself.

Jessie knew she liked strawberries.  She did decide to add raspberries, so she branched out a tiny bit.  She also had never had almond milk or used honey as a sweetener.  She really liked the smoothies (she had tried some before that she didn’t like) and was eager for us to buy the ingredients to make them again at home.

We enjoyed this coop day so much and talked about finding a way to repeat the exercises on other coop days.  This day we had borrowed Heather’s resistance bands and weights and everyone took turns.   We said we might all get our own equipment so we could all do the exercises at the same time.  I definitely plan to get weights and bands for Jessie and me so we can do some simple exercises at home.

In case like me, you didn’t know, the resistance bands have different amounts of resistance.  To start easy, I will buy bands with light resistance, instead of choosing by favorite color.

I hope you all are having a great week!

Josette