Alopecia Update: Trying Steroid Injections in the Scalp

If you’re new to our alopecia story, I first wrote about Jessie’s Alopecia Areata, what is is and what causes it.  Later, I wrote an update of what we were trying (oral and topical steroids) and natural options we were looking into.

It’s been about a month since Jessie finished the oral steroids.  Jessie does have some new hair growth! Within a few weeks (maybe 3? 4?) of when she started them we could see dark spots under the skin, new hair.  Those have poked through the skin now and are still very short, but hair is definitely coming in.  It’s spread out; it isn’t filling in the bald areas, but we’re just pretty happy to see some new hair at this point.

When she finished the steroids and we went for a recheck with Dr. R. she asked if Jessie might tolerate steroid shots in the scalp.  I tried to convince Jessie that day, but she wasn’t having it.  It just seemed too scary.  Dr. R. said it is pretty intense.  By her facial expression and description I didn’t feel it was a good fit for Jessie.   She recommended we see a pediatric dermatologist to see if they knew of any treatments for children that she might not be familiar with.  Her office made our appointment with a pediatric dermatologist at Children’s Hospital in Birmingham, AL.

I honestly didn’t feel very hopeful about there being anything new to try but didn’t want to not take this opportunity if there was any chance there was something more that could help.  It isn’t every day that Jessie feels sad about her hair loss, but sometimes it really bothers her.

We have always enjoyed a day trip, even if it’s just for a doctor appointment.  Birmingham is about a 4 hour drive for us.  Although Jessie isn’t crazy about being in the car all day, she does love to go out to eat.  We drove through McDonald’s for a chicken biscuit, which she loves.  We have unlimited data, so she watched videos on her phone most of the way there.

That daddy is such a prankster, can’t take him anywhere. He added a smiley face to the O on their white board in the room. We were gonna tattle on him but we forgot. He erased it before we left.
And….he tried to convince Jessie he could magically make the water turn on when he said Abracadabra. Silly daddy. He was, of course, pushing the lever with his foot.

When Dr. T. came in to talk with us after reviewing Jessie’s history (another younger/newer doctor working with her had come in and gotten information from us) the first option she recommended was trying  steroid injections.  While there is another option to try if Jessie wouldn’t go for it, the injections have the best success rate.  She said they would use a numbing cream and although she did say it would hurt some,  she described it in a way that we felt might be tolerable for Jessie.

She differed also from Dr. R in that Dr. R. didn’t seem very optimistic about the front areas of Jessie’s hair regrowing (I talked about this in the last update). Dr. T didn’t seem to feel that the lack of pinkness to the skin meant she wouldn’t get hair back in those areas.  She didn’t express opinion either way, but didn’t feel the lack of pinkness/signs of current inflammation meant that those follicles wouldn’t respond to treatment.

I explained in terms Jessie could understand all that Dr. T had told us.  Jessie had understood most of it as the doctor was talking; but it’s helpful when I retell it to her in my calm mama voice.  She trusts me to always tell her the truth.  I told that her that it would hurt a little, but the numbing cream would make it only hurt a little.  We explained that if it hurt too badly, we would stop and she wouldn’t have to do it anymore. She felt hesitant and a little anxious but we convinced her to try it.

They applied a numbing cream, the script she later wrote for us called it “numbing butter”.  It looked like a cross between butter and chewing gum.  She applied it liberally and let it sit for about 30 minutes.  Because we weren’t sure how Jessie would tolerate it they just numbed a small area, a circle about 2- 2 1/2 inches circumference.  We talked to her constantly to help her not dwell on it while we were waiting.

You can’t see it very well in the picture, but toward the back of the bald spot there is numbing cream on Jessie’s scalp. We were talking and being silly to keep her distracted from thinking about it.

When Dr. T came back we kept Jessie talking to help distract her.  We tried to get her to watch a video, but she wasn’t having it.  She likes to tell people about WWE though and her favorite wrestlers 🙂 Dr. T made injections under the skin fairly close together in that small area.  We were too busy trying to distract Jessie while it was happening to count how many there were.   There was a tiny spot of blood at each injection site right afterward and I counted at least 10 of those, it might be closer to 12.

Jessie was a little distressed but she wasn’t extremely upset.  I was SO proud of her for being so brave.  She doesn’t think she FELT brave, but she was brave.  I really am just so proud of her.  Although it was distressing to her, her lack of hair is upsetting to her too.  If her hair grows I hope she will feel it was worth it and be willing to do more injections.

Dr. T called in a prescription for the numbing butter. Although they let it sit for 30 minutes, she said longer would be even better.  Their office was closing soon after we left or they may have waited longer on this day.  She said we could put the numbing cream on at home about an hour before her appointment and let Dr. R in our town do the injections. If we see hair growth from this first set, we hope Jessie can be convinced to do it again. Dr. T said we could do a larger area next time if Jessie will tolerate it and can do it in 4-6 weeks.

When we got back in our car we called Jessie’s older sister to tell how brave Jessie had been and Jordan was proud of her too.  Jessie told Jordan she deserved a treat–a treat to go see her sister.  It is so sweet to see how she adores her big sister and always wants to spend time with her.

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We ate supper at Moe’s Original BBQ in Vestavia before heading back home.  The food was delicious.  Jessie was thankful for the charging block that her brother had given her for her birthday cause her phone battery had died and we can’t be having that.

Later, we stopped for ice cream at Dairy Queen for dessert.  You can begin to see why Jessie thinks a trip to the doctor out of town isn’t all bad.

Today, the day of this posting will also be a beezy  (how Jessie says busy) day with Jessie having a friend over, lunch with friends, going to take school pictures for our homeschool yearbook, and a meeting with our Down syndrome group, FRIENDS.  Reading all that makes my introvert self tired.

Next week, unless something else distracts me, we’ll continue our series on skills for independence with discussing household chores.

Hope you’re enjoying the last little bit of summer.  At this point in the summer I’m usually soaking up the last pool days knowing it soon won’t be an option.  Now, our pool is green and in desperate need of a new liner.  Boo!  So, I’m mostly continuing to purge all the junk in my house.  Will share an update soon as I’ve made a LOT of progress! Slow and steady does still win.

Till next week friends,

Josette

PS  In my last post where I referenced natural options…Jessie is taking a probiotic, one I think is better than the gummies we started with, that I hope will be good for her overall and immune health.  We were doing some of the essential oils on her scalp in between treatments but it’s too soon to know if that has been helpful.  Dr. R. and the young dr. (sorry to refer to him that way I didn’t catch his name)  both were skeptical about those being of any help simply because there isn’t enough scientific evidence to say for certain.  The young doctor I referenced above said the steroid lotion we were prescribed is the best topical anti-inflammatory so we are going back to using that for now.

Jessie’s 17th Birthday

We interrupt our regularly scheduled and more serious topic, on teaching skills for independence, to talk about something REALLY important, Jessie’s 17th birthday.  She’s been telling me a lot lately, with a big smile on her face, “I’m growing up so fast.”

Ha! If you know Jessie, you know her birthday is a big, honkin’ deal.  She finds it to be worth talking about almost every day.  She loves her own birthday the most for sure, but truthfully, she loves celebrating everybody’s birthday.

One of her favorite things to do on Facebook (she calls it her social media) is to wish everyone happy birthday when she sees their special day in her notifications.  She genuinely loves celebrating everyone’s birthday.  She loves choosing cards, buying gifts, she loves everything about birthdays.

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Jessie wasn’t happy with me that I told her she couldn’t have a separate “friend” birthday party this year.  Jordan’s birthday is two days after Jessie’s.  Many years (before Jordan was married) we would have a party for Jessie with her friends, a party for Jordan with her friends and a family party for the two of them together.  That’s a lot of partying.  A lot of planning.  And a lot of $$, even if you keep it as simple as possible.  Even before some stressful uncertainty about Evan’s job came into play (as to when he would be starting to work in SC 7 hours away,  instead of FL 3 hours away) I knew I just wasn’t up for that this year.

I had burst Jessie’s bubble several months in advance so she wouldn’t be anticipating something that wouldn’t happen. I told her we would have the one party for both girls with the family, and we would do something special the day of her birthday, but we wouldn’t have a separate “friend” party.  We did last year for her 16th and will next year for her 18th, but this year mama was gonna save a tiny bit of her sanity.  What little there is of that!

There is no need to start feeling sorry for Jessie.  She was celebrated every single moment of her birthday in addition to the party we had with family the next day!  A week later as I’m editing this post, a friend texted me that they wanted to stop by.  They had baked her a cake that they know she loves.  It has german chocolate layers with toasted coconut in the frosting.  Jessie never liked coconut until she tried this cake for the first time and she fell in love with it. Her birthday has been thoroughly celebrated!

The night before her birthday,  I asked if she thought she needed to get 17 spankings (licks) and of course she was horrified.  I asked what about kisses? She smiled and giggled.

The morning of her birthday, I heard her awake before the time her alarm was set to go off.  I went in and sang happy birthday to her, which she loved and giggled at.  Then I proceeded to give her 17 kisses.  Twice, all over her whole face.

Jessie LOVES to make plans.  And change them.  And talk about them.  And talk about them some more.

I wouldn’t let her talk about the nitty-gritty details of the day of her birthday until sometime in July.  Cause I knew it would be a daily discussion from that point on.  In the days leading up to her birthday, she planned and schemed and changed her mind many times about the details of the day.   That got a WEE bit stressful.  She made plans with Jordan (her older sister) and Jordan’s mother in law, Marcia, and she would talk to each of them and tell them something different, then Jordan would call or text me for clarification.  Finally, I had to tell her she couldn’t change her mind again once the plan for the day was set for about the 3rd time.

I realized afterward, that part of her dilemma was she wanted to plan her day so that she ate two meals out on her birthday.  She didn’t want to wake up and eat at home, like any old ordinary day. She’s a princess like that.  But, her birthday only comes once a year.  Thank you, Jesus.

Jessie’s day was FULL, just like she likes it. 

We met friends for lunch at Chick-Fil-A, Jessie’s choice, and her friend Gracey gave her a monogrammed t-shirt.  Blue is Jessie’s favorite color and she loves monograms.  She’s a true southern girl in that way.

After lunch, we met Jordan and Marcia, (this was Jessie’s request) at Kohl’s for some shopping.  She loves Mrs. Marcia.  Mrs. Marcia is one of those special people who really listens when Jessie talks and is interested in what she has to say.  She goes along with any pretend plans and giggles right along with Jessie.

Jessie likes shopping at Kohl’s and she enjoys shopping for clothes for herself, but when she’s done, she’s ready to check out!  No more dilly-dallying around. And that’s even with her getting the princess treatment with us pushing her in a wheelchair.  (She walks just fine, but can’t enjoy shopping for as long as she wants to if she has to walk/stand the whole time.) We all tried on some clothes that day; Kohl’s was having a great sale.  Jordan gave her birthday money and Jessie had money as she had been saving her allowance for a while.  She picked out 2 dressier shirts and 2 tank tops that were on sale.

Any guesses as to how many of them were blue?  Three of the 4.  I’ve almost given up worrying about if she only wears blue.  I can hardly convince her to buy any other color at the moment.

Jessie didn’t want me to stay with them. 

In the big-day planning stage, she had said she didn’t want me to come along for her birthday with Jordan and Marcia.  She carefully explained that she didn’t want to hurt my feelings.  I could see on her face that she was worried that I would be upset with her.  It did hurt my feelings a little, but I also understood why.

No matter how hard we try, when we get together, Jordan and I (or other adults) tend to monopolize the conversation.  We try to include Jessie, but we spend a lot of time talking about things that she isn’t interested in.  On her birthday, she didn’t want that to happen.

After our Kohl’s shopping, I  left the girls shopping at Ross and went my own way to order them a Dairy Queen ice cream cake for their party with our family the next day.  Jessie felt so grown up to be shopping with the other girls without mama.  They shopped at Target, found lip gloss at Wal-Mart, and had supper at another of Jessie’s favorite restaurants, Things N Wings.  Wherever Jessie goes, she always orders chicken fingers and fries. I make her eat a little wider variety at home, but at restaurants I just don’t fight that battle.

Jessie couldn’t wait to get home and excitedly show Daddy all her purchases.  Isn’t it sweet how all girls want to do that?  Me, Jordan (when she lived at home) and Jessie when we get home from shopping all take our purchases to show Jay….just some of us might choose not to disclose how much money we spent.

Our party with family.

My birthday girls, 17 now and 24.

Jordan got to choose the location, Cheddar’s.  And Jessie chose ice cream cake over a baked cake.  Jessie loves blue; Jordan likes pink and purple.  I had the ice cream cake decorated in pink and blue and it ended up looking like it was for a baby shower.  Oh, well.  It tasted really good and this time they got the writing right.  They had gotten Evan’s cake wrong on his birthday which had been both annoying and quite entertaining.

Jessie was really happy her brother could come home for her birthday party. She would have given him serious trouble about it if he couldn’t!

If you like onion rings, you should definitely order some next time you go to Cheddar’s!  They’re sooo good.

She’s such a teenager. 

These days, like a typical teenager, she loves to pick out her gifts.  There is zero uncertainty in her mind about what she likes and doesn’t like.  It makes it much easier for everyone if we let her pick it out herself. She was thrilled to get an Amazon card from Aunt Tami.  She came home and immediately ordered a blue towel wrap , which she is calling a robe, for after her shower.  She got cash from  Aunt Debbie and Uncle Danny which she hasn’t spent yet, but she will and looks forward to it.  Marcia let her pick a gift while they were shopping  together and she chose a new make-up bag (to join the many others she owns) at Claire’s.  Like her mama, the girl loves bags.  Guess what color?

These days, all the stuff she still owns from the days when she loved hot pink and purple…she thinks they allll need a blue replacement.  Her brother, Evan, bought her a blue portable phone charger, which she is thrilled about.  When she is away from home she won’t have to worry about her phone dying anymore.  Oh, the worries you have when you’re 17.

Unlike the days when we bought lots of toys that she might never play with, she really enjoys the gifts she picks and will mention how much she likes them for days in a row.  It’s so sweet how thankful she is for new things when she gets them.  I think it helps that we don’t buy a lot and she has to earn and spend her allowance.  When she gets a gift she didn’t have to save for, she really appreciates it!

On a more serious note….

I’m really thankful that all 3 of my kids are so thoroughly celebrated by our extended family.  They have such supportive aunts and uncles and they love their cousins.  Jay has experienced job changes through the years and sometimes it has been hard to stay in our area and not take a job away from our hometown.

Aunt Tami explaining about the Amazon gift card. We weren’t home 15 minutes after the party before she placed her order. This girl knows what she likes and wants.

We feel it’s been such a benefit to all our kids that their aunts and uncles live close by and  have attended dance recitals, baseball games, gymnastics competitions and football games.  We already felt this way before, and when Jessie came along with Down syndrome, it intensified that feeling a little.  We are thankful for the all the loud birthday parties through the years.

It’s over!

It’s been several days now since Jessie’s birthday. She told me tonight she’s a little sad about how long it is till her next birthday.  Lord, help us.  I couldn’t help myself, I told her Christmas will be here in 4 months.  Soooo, I’ve probably started the Christmas talk.  It makes her happy to have something fun to anticipate.  And I like making her happy.  Even if it makes me crazy.  Jay says that’s a short trip.

A few days after her birthday we had lunch with our friends and Joshua gave her a card he had made for her <3 They’ve been friends their whole life. Heather and I became friends while we were both pregnant and then Joshua was born 3 weeks after Jessie. There’s never been a time that they weren’t friends.

Next week, we will finish up our series on skills for independence with talking about household chores and being involved in the day to day taking care of our home.  The not-so-fun-but-necessary-stuff.

Till next week friends,

Josette

 

 

Teaching Skills for Independence (Part 2) Start with Self-Care Skills

Teaching self-care skills to people with Down syndrome helps them gain confidence and independence.  My experience with Jessie has been that each new step of independence gives her confidence that makes it easier for her to learn, and want to learn, the next thing.

The actual teaching of some of these skills has been harder for me than I might have imagined.  Not so much because the teaching of them is actually difficult ( I mean, hello, I have two other kids that I taught these same skills!) but I have had to approach them sometimes very differently than I did with my other kids.

Last week’s post was Teaching Skills for Independence Part 1 (the WHY).  If you haven’t read that one, you might want to start there.  It might seem silly or unnecessary to explore why, but I find that keeping WHY in my mind really helps me keep at it when the going gets tough.

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If you’re just beginning to teach self-care skills try not to get stuck/overwhelmed in the decision-making process.

Sometimes I would get stuck in the decision-making process.  What to teach first? What is MOST important? With her current abilities what can she learn right now and what is best left for later when she has built up some skills?   I hope this blog series will help you more easily be able to think through those questions and not get stuck in the decision-making process.

Instead of trying to do all the things, start with teaching your child just a couple of self-care skills that will make the biggest impact in your daily life.

To be completely honest, when your child is young it can feel overwhelming to think about all the things your child needs to learn that you need to teach them.  That can lead to spinning your wheels.  Sometimes, worrying about too many things at once can actually keep you from progressing in the areas that matter the most to you.

What can you teach your child to do that will make your home run more smoothly for you and enable them to be more independent?  Assess what is causing stress in your home on a regular basis. This might help you know where to start.

Pick just just two or at the most 3 things to be priority.  It’s okay if you’re working on other skills but on busy or stressful days make sure you’re consistent on just these 2 things you’ve determined will make the biggest difference.  Don’t allow yourself to stress over all the other things.  You’ve decided what gets top priority for now.  When you master the 2 things you’ve determined will make the biggest impact on your everyday life, then you can choose two new things to be the main focus of your energies.   

If the skill you want to teach requires multiple steps, teach just one at a time if necessary.

If it feels overly stressful your child won’t be as motivated to want to learn new things.  Break it down into steps.

Example: making a sandwich.  Maybe on the first day you get out everything that’s needed and they mostly watch.  They do just one or two parts of making the sandwich.  Jessie has a hard time with bread ties.  I would open the bread; she would spread the mayo.  At first it took a long time to spread the mayo.  If she was frustrated after that point I didn’t try to teach her how to cut the sandwich in half (the way she likes her sandwiches) but once she mastered spreading the mayo she was ready to learn to cut the sandwich in half.

Watch for when your child is feeling frustrated.  You want them to leave the teaching session feeling successful; then they will be more open to learning the next steps.

A friend of mine once suggested to begin teaching them the last step first.  Example: making tea or koolaid.  She suggested just let them stir the pitcher at the end.  They had a part and end the session feeling successful.  The next time you include them one step before, like pouring in the already brewed tea or the koolaid packet and water.  Sometimes I approach teaching this way and sometimes I just let her observe the parts she isn’t ready to participate in yet.

When I think back to skills Jessie now has that have made the biggest difference for her independence and life being less stressful for me, here are some at the top of the list.

Your list might look different from mine according to your child’s strengths and weaknesses.

Showering Independently

We had different difficulties whether she was showering or bathing but this was an area where I was desperate for her to be able to manage independently. When she showered herself she needed help with hair and I always got soaked.  In the tub, I was up and down helping her with her hair and she has a hard time going from sitting to standing in the tub.  Although I still help daily with some personal hygiene, Jessie showering from start to finish independently (getting her own clothes, towel, showering etc) has literally made my life better 🙂

Jessie has always complained about her feet (one more than the other) hurting if she stands or walks for very long.  In the beginning, it was hard for Jessie to stand in the shower for the length of time it took for her to bathe herself and wash her own hair.  She would also complain that her arms were tired as she held her arms over her head long enough to wash and condition her own hair. To add another level of difficulty, I only wanted her to use conditioner on the bottom half of her hair so her scalp wouldn’t be too oily.

Among my friends, it seems that the guys with short hair master the showering process more easily and longer hair complicates it for the girls.  This was most certainly true for Jessie. The tip someone gave me that was a LIFESAVER….hold up a mirror for your child to see where she has and hasn’t gotten shampoo bubbles yet.  We were both getting so frustrated with me telling Jessie, “on the top”, “on the front”, “scrub the side”, she would start to cry that her arms hurt before it was all done.  Holding up a mirror for her so she could SEE as I described what she needed to do was a LIFESAVER.  For real, y’all.

She doesn’t yet remember to clean the hair from the drain before showering, so sometimes she’s standing in water.  She can’t reach where we hang the towels so she lays them on the sink when she’s done.  I should get a different towel rack, ours are hung on the back on the door right now.  BUT: she gathers her clean clothes for the shower, she puts a long towel that covers the whole floor (she doesn’t have good balance) down, she showers, she dresses, she brings me the leave-in conditioner (she conditions in the shower but still has tangles) and hairbrush to get the tangles out, leaves the towels on the counter for me to hang up, puts away the brush and conditioner and her dirty clothes.  Hallelujah! We will work on those other things in time.

Waking Up With Her Own Alarm Clock

I didn’t enjoy going back to wake up any of my kids multiple times.  I’ve had two kids that didn’t want to get up on the first try.  We could have used an alarm clock before she had a phone of her own, but she never wanted to and I didn’t make her.

Suddenly, when she got an iphone she thought it was fun to set an alarm to wake up.  We homeschool so she is able to wake up leisurely.  She sets an alarm for wake up time and then a second one for 15-30 minutes later (depending on the day’s activities) and watches a video till the 2nd alarm goes off.  Not everyone can or would want to allow the video time, but this removes the battle in it for us.

Bed Time Related Tasks

Each skill came separately, but Jessie gets dressed for bed, brushes her teeth, every other night she brings me the part of her cpap machine I need to wash, and she sets her box fan (everybody in my house sleeps with a box fan) on top of a tv tray.  Jessie can’t manage her cpap independently but I believe she will be able to in the future.  The machine is expensive (if she breaks something) and that hasn’t been a skill that has been top priority for me.

At bed time we have a routine of some things that I do for and with her and enjoy a brief before bed chat about the day we had or the day to come and a kiss goodnight.  But, I do appreciate all the steps she can do before bedtime that take away some of the stress at the end of the day when I’m tired.

Basic Around the House Skills

I’m not including here cleaning type chores, but just what most folks are expected to do for themselves. We’re home a good portion of the day together, so it makes a big difference for Jessie to be able to do basic things around the house for herself.

Aside from what we’ve talked about above (showering, waking herself and bedtime), the list below are things Jessie currently does that she learned over time. These are some of the things you can consider as you decide what you want to be your top priorities to work on.  Each of these are skills that were broken down into individual steps and we added new steps over time. 

  • She makes her bed and brushes her teeth (Umm, something on YouTube and a friend motivated her to make her bed.) Can’t take credit for that one, but I’m happy about it.
  • Most days she makes herself a biscuit in the microwave for breakfast.  I know that’s not the very healthiest choice.  That’s a whole ‘nother category.  But, she can open package, safely warm her biscuit, add jelly, fix her own drink,  throw away the trash and put the jelly back in the fridge.  She eats her breakfast in her bedroom watching a video and then brings her dishes to the kitchen.  I know, we’re super chill around here.  That’s what works for us in this season of life.
  • She can turn the oven to the temperatures we use most often.  Not every number is on the front of the oven, but she has learned the temperatures we use for re-heating food or cooking a frozen pizza.  If she asks for pizza she turns the oven to the correct temperature to pre-heat.  She can open the pizza box or chicken tenders etc and put them on the pan for when the oven is ready.
  • She fixes her own drinks from the pitcher in the refrigerator.   If the pitcher is very full sometimes there’s still a little bit of a mess.  Sometimes she needs help reaching a cup in the cabinet or help getting the pitcher if there are a lot of things in front of it.  I try to keep the cups and pitcher where she can get to it, but that doesn’t always work out perfectly.  Although she can drink from a cup without a lid, she likes to take drinks to her room so she uses Yeti type cup or other similar cup with lid and straw.
  • If I have prepared meals that we partially fix on our own, she does the part she can.  Ex: today for lunch we had soft chicken tacos.  I had cooked the whole chicken tenders.  I cut into bite size pieces to go in our tacos (when she eats tenders for her meal she can cut them and does) and she added the shredded cheese and microwaved her tacos to melt the cheese the way she likes.
  • She makes her own sandwiches most of the time.  She can make peanut butter and jelly or meat sandwiches.  She likes mayonnaise and bbq sauce on her turkey sandwiches.  Sometimes she gets a little too much bbq and it’s a little messy.  I used to help guide her as to how much bbq sauce to use and now she does it on her own pretty well.  She can safely use a steak type knife to cut her sandwich in half.  It took her a long while to learn all these steps but now shes a PRO.  She likes her sandwich meat rolled (who knows where she learned that!) and it looks quite pretty when she’s done.
  • You can let your child help you when you cook.  I said YOU can.  This is stressful for me so I don’t do it as often as I should.  She doesn’t love helping to cook, so when I do, it’s for the purpose of teaching her something specific or making something she enjoys.  We do other good things and it just isn’t at the top of my list for now.  If your child enjoys it, you might put this higher on your priority list.

Starting anywhere is helpful. Start with what you feel is most important or would be the most helpful to you.  If you see right away it’s a skill too hard for your child, even if broken into steps, scrap it and start with a different skill. Write that one off as a diagnostic session.  Having difficulty with one skill doesn’t mean they will have the same amount of difficulty with another one.

Keep it as positive as you can for the both of you.  Parenting any child, but especially a child with special needs, is a marathon not a sprint.  Try not to wig out be overwhelmed in the early stages. Be happy when your child is making progress, even if there is a ways to go before mastery.  I always find that when I’m teaching my child something new, God is usually working on his child (me) too.  Sometimes that training is more pleasant than others.  Hang in there, mama.

Till next week,

Josette

 

 

 

 

Teaching Skills for Independence Part 1 (the WHY)

Our local Down syndrome group, F.R.I.E.N.D.S., has a private Facebook group where we discuss topics among just our local parents.  It’s nice to have this space where we have the privacy to talk with other parents who are or will be facing the same issues.

In our Facebook group discussions last week we talked about teaching independent living skills. What are those skills our children, teens, and adults with Down syndrome need to know in order to take care of themselves? And what skills do they need to learn in order to share the responsibility of taking care of their home? It can be hard to know where to start or how to motivate our child to want to learn these skills.   Those discussions sparked this blog topic that will be a multi-part series.

There is a lot Jessie still needs to learn, but she has come so far in these areas from where she was a couple of years ago or even just last year.  Seeing how capable a couple of Jessie’s friends with Down syndrome were (some are older than her) in some of these areas was what inspired me to expect more of Jessie at home.

Just like with the rest of the “typical” population, everyone with Down syndrome has differing levels of ability.  Not every person will reach the same level of independence, however, you might be surprised at what your child can do if you start small and build on each skill as they learn.

There are several  reasons why people with Down syndrome need to learn how to clean, cook or generally be helpful in taking care of their home in addition to taking care of their physical bodies.

We’re going to start with WHY, because I’ve learned in my parenting years that if you continually remind yourself WHY, it can keep you going when the going gets tough.  

WHY every person with Down syndrome needs to learn home skills even if you think they may always live at home with you.

  • They get a feeling of accomplishment and like knowing they are more independent. 

That’s not saying that when you start changing things up you won’t meet with resistance!  When I first starting expecting more from Jessie, she wanted to be selective about when she wanted to do “what teenagers do”. 

Like my other kids, she thought it was kinda nice if she could stay up late and have an iPhone, but she didn’t like having to do chores.  Like my others kids though, I try to give her age and ability appropriate responsibilities.  I frequently remind her that she’s not a little kid; she’s a teenager and teenagers have more responsibility.

From a young age I’ve seen that Jessie, just like my other children, liked the feeling of accomplishment that came when she could dress herself, shower herself etc. She’s watched her siblings grow up and she saw that they took care of things for themselves.  I remind her of these things when I need to.

  • It gives them something productive to do with their time.

I never let my other kids have unlimited screen time or be lazy all the time.  Jessie does more of both because there are fewer things she can do independently.  The more she learns to do, the less she is vegging out or bored while I am doing the mom/homekeeping things I need to do.

  • They have less time to be bored.

We homeschool so we have more time at home than kids do that go to school.  I’ve heard parents of adults say that when their kids graduated, going from a full-day school schedule to being at home full-time it was a hard adjustment.  They were sometimes bored or depressed.

Responsibilities at home won’t take so much of their time to fully alleviate that, but the more they can do at home, the less time they have to be bored.

My other kids knew better than to say they were bored….I would find them something to do that would be helpful to me.  Again, this is harder to do with Jessie, but building her skills helps fill up her time in ways that are good for her and good for me.

  • YOU are probably exhausted and could really use the help!

When you parent a child with special needs, you are in each parenting phase usually for longer than you are with your typical children.

By the time Jessie was 16, I had been a mother for 23 years.  This mama is tired.  This mama is tired, physically and emotionally, of doing the things that are expected of you when you have a younger child.

Two years ago, I know I felt like I never had a moment to myself that Jessie didn’t need something.  If I sat down, it seemed that was the moment she would ask for a drink or something to eat.  There were parts of showering that she needed help with for a long time. They weren’t a lot of things that she could do completely independently.

Now, Jessie can make a pitcher of koolaid from start to finish (sometimes it’s a little more tart if she forgets to level the measuring cup) fix herself a drink, heat a biscuit in the microwave or make herself a sandwich. She mostly puts away everything she uses in her makings. She sometimes still spills a little koolaid when she carries the pitcher to the refrigerator when its full to the brim.  Now she is learning how to mop it up.  To be truthful, some of these steps could have gone faster.  Have I told you that I’m tired?

Although I still feel on call 24/7 it has made a tremendous difference that Jessie can do many more things independently.  Some days it does still feel like if I sit down that’s a cue for her to call my name, but we have come a loooong way, baby.

Think long-term.  Your child will likely outlive you. 

I think often, maybe too much, about when Jay and I are gone.

When we are gone, Jessie’s siblings will help take care of her.  She will probably live with one of them.  I want her to  integrate into their families as seamlessly as is possible.  Although they dearly love Jessie and welcome this responsibility, I want it to be as easy and joyful for them as it can be.

It helps everyone, Jessie as well as them, for Jessie to be as independent as she is capable of.  She may have limitations of what she can do (I think it less likely she will fully operate the oven independently, for example) but we are all, including her, best served for her to do all she is capable of. This helps ME be motivated to keep pressing on.

Okay, so we’ve established there are good reasons to teach them independence and home-keeping skills.  HOW do we motivate them and teach them? 

That’s a teaser, cause that’s what we’re talking about next week.  But here’s one little example of why you want to make the effort.  And it is effort on your part.

Yesterday, I had already started this post and Jessie and I made cupcakes for her to take to a youth movie night with our church.  Making those cupcakes was a huge reminder of how far she has come from the first times we tried to make cupcakes together.

In those first cooking sessions, years ago now, I would have determined that although it would take much longer and be much messier and mentally tiring, I was going to include Jessie in cupcake making.  Then, after all that build up, either she would lose interest or say her arm was tired (holding the hand mixer) and she wouldn’t participate for very long.  It was a big let-down.  It made it easier for me to not made the effort to  include her the next time.

Yesterday, she made the cupcakes almost entirely by herself. She cracked the eggs, mixed the batter, filled the cupcake pans and when they were done she frosted them all.  It wasn’t entirely stress free for me but it was so much more relaxed.  I remember the earlier days of us baking together when I wondered if we would ever actually enjoy it. We both did and I was so thankful.

I was so, so proud of her.  It seemed like such a teenager thing to do.  And she was proud of herself too.  When I helped her up the steps to my friend’s house where they were watching the movie, she reminded me (sounding like the mother) to not let the cupcakes she was carrying fall.  She doesn’t have good balance and going up a step with something in her arms is hard for her.  Usually, she’s concerned about herself and doesn’t want to be carrying something up steps.  These were HER cupcakes though, HER project and I was the helper, not vice versa.  It felt really good for both of us.

I don’t get this right all the time.  Not even anywhere near all the time. Probably, Jessie could know how to do even more independently if I always included her in what I was doing.

Just start somewhere and take baby steps.  Whatever I’m trying to accomplish, I find that baby steps are usually the way to go.  When I try to be all gung-ho over something new I rarely stick with it.  Better to take baby steps that we can actually stick with than gung-ho then stop.

And in all this process, maybe you need to give yourself a little grace.  You probably already show patience and understanding to your child.  Sometimes as mamas we need to realize that it’s okay that we will never get it perfect.  Grace.

We’ll talk next week about HOW to teach some of these skills, the tips and tricks that are working for me.

Till next week friends,

Josette

Last Week We Had a Little iPhone Misadventure

Sooooo, last week we had a little iPhone problem.

Jessie brought me her phone to put in the passcode. She had already obviously tried several times because the screen said the phone was locked for 5 minutes before she could try again.

I was drawing a complete blank on a passcode for her phone.  I tried a couple of possibilities of what I thought I would have set it to be.  Finally I thought, wait, we don’t have a passcode to get into Jessie’s phone.  I purposely didn’t set one. 

With each time that we’re getting locked out, Jessie’s emotions are ramping up.  She cried such that you would have thought someone had died.  Although she so loves her phone and hates to ever be without it, she’s not usually quite so dramatic.  Her excessive emotion was explained when she woke up the next morning with terrible cramps.  Obviously, her hormones had her feelin’ a little extra.

So, at first I thought this was an iPhone fluke.  It has somehow set a passcode on the phone.  I’m thinking this is the kind of thing that only happens to us.  I’m googling all sorts of things  and trying to figure out what in the world could be going on.

I tried all the possible passcodes I could think of.  It locked us out for 5 minutes a few times, then 15 minutes, then an hour.  Somewhere in the middle of all this, I asked Jessie some questions because I just couldn’t understand why it was asking her for a passcode at all.

Jessie tries to tell me the passcode is her phone number.  No, it isn’t baby, you don’t have a passcode.  I thought she was remembering when one of her siblings had part of their phone number as their passcode.

Welllllll, it turns out we were being asked for a passcode cause Jessie had decided to set one.  She went into settings and set up a passcode.  Which she did not write down.

She said the passcode was her phone number.  She had looked up her phone number in her contacts.  The passcode is 6 digits while her phone number is 7.  I tried the first 6 numbers before I was locked out for an HOUR.  It progressed eventually to the point it said we had to connect to iTunes in order to unlock.

We don’t have iTunes on a computer or own a computer that you can install iTunes on.  I use a Chromebook for blogging and it’s currently our only laptop in the house.  Chromebook and iTunes won’t work together.

When Apple online chat says they’ll be with you in about 2 minutes,   DO NOT BELIEVE THEM.    Also, don’t reload your page wondering if there has been a problem when it’s taking forever.  It was 10:40 one of the times that  I requested apple online chat support and it was supposed to be available until 11 our time.  It continued to say they would be with me in about 2 minutes till way after 11.  I gave up for the night.

Jessie always uses her phone as her alarm clock.  She sets one alarm for wake up time and a 2nd one for a few minutes later so she can watch a video before she gets out of bed.  She was NOT happy that her bedtime (setting her alarms and charging her phone) and wake up routines were disrupted.

When I questioned Jessie as to why she set a passcode on her phone, she said she hadn’t liked that I had read her texts and Facebook messages earlier in the day.  Further questioning revealed she was afraid she was going to get in trouble.  She has never sent or received any inappropriate messages.  She has only gotten in trouble for continuing to text or call when someone doesn’t answer back.  I can always tell by her facial expression that Jessie is concerned/doesn’t like it when I read her texts or messages.

Sigh.  I had set other parental controls on her phone but this wasn’t a scenario that had occurred to me.

I called Apple Support the next morning and someone was able to walk me through a solution.  Because we had enabled Find My iPhone, I was able to find the phone on my laptop and erase the phone and start completely over.  When looking at  iCloud we thought that her phone wasn’t backed up at all, but her pictures appeared later so evidently I had just the pictures set to back up.

We had to add back all her contacts.  I will change the back up on her phone so that in the future the contacts will get backed up.  Although I have more things backed up on my phone, most of what she uses her phone for isn’t necessary to keep or pay the storage fee.  I do still need to see about getting back an app that I had paid $15 for.

When I was re-setting up her phone, the option to set a passcode came up.  Jessie said, “Don’t mama, don’t.”  She found being locked out of her phone so traumatic that I don’t think we’ll have to worry about that particular issue happening again.

Someday, this incident will probably be funny, but this ain’t that day 🙂

The iPhone is restored and Jessie’s life is good again.

Hope you’re having a great week!

Josette

Feeling Stuck and Not Wanting to Stay There

All of the stressors I’m currently experiencing are just normal parts of life.  Some struggles related to Down syndrome are feeling heavier than usual.   Until menopause, with the exception of when birth control pills had me wonky, I’ve not been an overly anxious person and I’ve never been depressed.  Like everyone, I have had bad days, but I usually bounce back pretty quickly.  I’m not bouncing as well lately.

I have found myself feeling “blah” a lot this summer.  I’ve even questioned whether I’ve been experiencing a mild depression.  I feel sure some of it is hormonal and some of it is situational.  Because the way I feel isn’t the same everyday I haven’t been at the point that I felt ready to consider medication.  I’m not ruling it out, but  I’m not ready to go there. It’s a shame that all the natural options are expensive and not covered by insurance, because there are natural options on my radar that just aren’t affordable at the moment.

I don’t primarily feel sad, although I sometimes feel more emotional, but I have lacked the emotional, mental and physical energy to do what I have wanted or needed to do this summer.

After looking forward to having time for home projects, this summer many days I have found myself feeling tired mentally or physically, wanting to lay in my bed more than I should (even when I don’t, I really want to), and generally lacking the motivation or energy to do what I have in mind that I really want done.  I also feel that my phone is a constant distraction and part of what makes my mind feel so scattered at times.

I have worked on some projects and done some de-cluttering and reorganizing but it has seemed such a struggle.   I have wanted to implement some new things with Jessie and I just haven’t been able to make myself do the necessary work.

Some of my emotions are brought on by situations we’ve experienced with Jessie recently.

I have felt saddened by several situations that occurred with Jessie this spring and summer.  I don’t want to give you the wrong idea, individually these are small things, there has been no big or terrible thing that has happened.  I don’t feel able to share the specifics.  But these small things have added up to me feeling very sensitive where she is concerned.  In these situations, I can respond rightly on the outside but it tears me up on the inside.

As I talked with my oldest daughter last night about some of the things regarding Jessie that I hadn’t had opportunity to share with her, we were both able to see some positives that have come from some of these struggles.  In each hard situation, either someone else gained knowledge and better understanding (of Down syndrome, disability or Jessie in particular) or Jessie learned some skills that will help her as she is getting older and gaining independence.

But can I just tell you, when I feel protective of Jessie because something has happened, I really just want our little family to live on an island where only people who understand and go with the flow are allowed! My instinct is to pull her back where she can’t be hurt or misunderstoodI know that isn’t healthy, and I wouldn’t actually act on those feelings, but that is how I feel.    

I’ve heard Dr. Phil use the analogy that emotional hurts are like your psychological skin has been burned and that’s how I’ve felt.  Raw.  Easily injured (where Jessie is concerned).  I don’t like being in this place.

I find it difficult to be willing to share our struggles with Jessie. but I think it’s so important to be honest about both the joys and the challenges.  If I shared struggles I had with my other children, no one would question if it was a good idea that they were ever born.  The same should be true of Jessie.

I’ve also been stuck physically.   

We currently own two vehicles but only one of them has air conditioning.  When I need the car, my sweet husband drives his old 1960 Chevy truck, which he loves, other than the fact that it has no A/Cand its hot as you know what in south Alabama right about now.   I do most of my grocery shopping and errands at night, because I’m home without a car most days.  Most of the time I don’t mind that, but sometimes I do.   We hope to buy another car within a year, but we’re both making the best of our car and financial situation for now.

Maybe I’m not overreacting.  I guess we have had some stressful events lately.

We’ve had a lot of pet drama this summer.  Our dog, Boo, was in kidney failure and after a couple of weeks of stressful worry and care, she was mercifully (for her) put to sleep.  Last week, our 15-year-old cat had to be confined to our bathroom for about a week to restrict her movements because she had a bulging disc and Buddy won’t leave her alone in other parts of the house. I’ll spare you details, but it was a very stressful, very poopy, very stinky week.  Our dog Stella is having some kind of allergy, we think to fleas.

Jay had a stress test and heart cath a couple of months ago.  This week we couldn’t figure out what was going on with his ankle and it turned out to be gout.  I have been having tooth/jaw pain for about 3 months and finally had a root canal earlier this week.   I was having headaches too that I couldn’t determine if they were related to the tooth or the barometric pressure related to weather changes.  Either way, being in pain has contributed to my feeling “stuck”.

This is a season, and I don’t like it, but I know it won’t last forever.  Mine won’t and yours won’t either.  

Yesterday I spent several hours with a friend that was feeling some of the same things.  Although our specific struggles are different, we were feeling much the same.   Our kids with Down syndrome are the same age and their entire lives it has been this way.  One of us will call the other needing to talk and often we’ll find we are feeling similarly.

Sometimes It feels so good just to be understood.  There are things we can talk about that are immediately and deeply understood with so much less effort than it takes to explain to someone else.  Sometimes just talking through it helps alleviate the hurt or find a solution.  Even when there is no quick solution to be found, my heart always feels lighter afterward.

Yesterday I talked with my friend and then my oldest daughter.  They each love and understand me and help in different ways.  It was nice too to just have some time out of the house, some of that time alone, and it helped me wake up today with fresh perspective.

Jessie had been overly emotional the last few days, every tiny disappointment leading to tears.  Although I don’t have periods anymore, I definitely still have cyclical hormonal changes. I think I may have synced up to Jessie’s cycle and maybe both our emotions were somewhat explained when she woke up with cramps yesterday.

Now I just want us to eat all the chocolate and feel better 🙂

We all have good days.  We all have bad days.  Sometimes we have a season of real struggle and that’s not fun.  This too shall pass. If you’re feeling stuck, for any reason, I’d love for you to send me a note and I would like to pray for you like only someone who has been there knows how to.

Till next week friends,

Josette

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

DIY Dollar Tree Mirror Makeover

This was such a simple DIY I almost didn’t make a blog post for it.  If I had just shared on social media, it wouldn’t show up on the blog in the DIY section though, so here you go.

I was inspired to think about Dollar Tree mirrors differently because of a project Passionate Penny Pincher shared.  I can’t find her mirror project to link to, but she has a section on her blog of DIY projects using Dollar Tree materials.  She has a section called Friday fluff ups worth checking out too.  Even when Laurie isn’t using Dollar tree materials, all of her projects are “penny pinched” and she has lots of good ideas.

Okay, on to the Dollar Tree mirror.  Because this mirror is small, I might have liked to use 2 or three of them hung together, or as part of a gallery wall, but I bought the last one they had that day.

We have 3 different Dollar Trees not too far from me, so if you have more than one Dollar Tree, you might check multiple locations when looking for specific items.  One year I found stocking holders I liked and had to go to more than one store to find enough of the matching ones I wanted.

This is what it looked like before, and with the rest of the day’s dollar tree haul in the background 😬[[[[[[
I didn’t hate the original finish, it just wasn’t exactly what I wanted.

I covered the mirror with masking tape to protect it from the paint.

I used this Rustoleum spray chalk paint. I think it took 3 coats to get inside all those little cracks. When I went to paint a coat from the back, to more easily access some of the crooks and crannies, I almost messed the whole thing up.

I think the first coat wasn’t dry enough to be turned upside down.  When I sprayed a coat of paint from the back, the front wanted to slide a little (not even a true drip, it was kinda crazy).   It wasn’t dry enough to lay it on the paper, so I put a block of styrofoam underneath the actual mirror part (that wasn’t being painted),  to hold it off the ground when I painted the back soon after I had painted the front.   I was able to smooth it out , but be careful if you paint from the back side after painting the front.

The smarter thing would be to wait until the front side is completely dry to the touch before painting the back, but I never do that.  Yes, I’m a little impatient and sometimes that’s a problem.

I love how it turned out!  The mirror is small, so it doesn’t function much like a mirror (can’t see much in it), but I like that it adds a little something different to a photo grouping.

I didn’t have to use the whole can of paint, so I have some left for another thrift store or Dollar Tree find in the future.

I don’t know if this is where it will stay, but I kind of like it here.

I tried it on our foyer wall and although I decided not to leave it there, I love how the color popped against the terra-cotta colored wall.

Now that the last of Jessie’s camps are over, our summer will be slower paced. I’ve gotten some paint samples and taped them to Jessie’s walls and hope we can make a decision and repaint her room sometime this summer. It’s one of the many things on the list for the summer. But, it’s at the top of the list so hopefully I will follow through.

I hope you’re enjoying your summer! I hope it includes floating in a pool, reading books, spending time with friends and being creative. Well, those are MY favorite things; I hope your summer is full of whatever refreshes and inspires you. We all need a dose of that!

If you’ve been crafting or doing some DIY I would love to see what you’ve been working on!

Till next week friends,

Josette

DIY Thrift Store Lamp Makeover

When I found this lamp at a thrift store, I instantly loved the detail of the metal. I love how it has clean lines, but isn’t plain. I LOVE it. I bought the lamp for $8.

Ummm, that shade though. The shade was atrocious, and had to go asap! I have it in my to-be-donated box. Someone else shopping in the store at the same time said they thought it could be made over in a cute way.

As soon as I saw the lamp, I pictured the metal spray painted a creamy white. I originally thought I would add an antiquing wax, but once it was painted I loved it and decided to leave it the clean and creamy color without the antiquing wax.

The lamp before. Oh my goodness, that shade. On the other side was a little snowman.
With the shade off I just needed to tape the electrical part at the top to protect it from the paint.

I used this Rust-Oleum satin finish paint in Heirloom White.

Since our oldest got married, for the first time in I don’t know how many years, we have a guest room. I painted this room last year but haven’t put the finishing touches on the room.

It is currently, I think, my favorite room in our house. It doubles as a space I can work on my blog without being distracted by seeing dirty dishes or laundry that needs to be done. I close the door and sometimes turn a box fan on low to muffle the sounds outside the room for a little peace and quiet.

This is my desk (a small adjustable table from Sam’s). I enjoy this little spot with a view out the window.

I knew I wanted to use the lamp somewhere in this room. As soon as Buddy hears me open the door he runs in to get in the window.

I wish I had taken a picture of the shade before I painted it! I thought I had. It was the right size and shape but printed with a floral pattern that didn’t match the room. It was just $2 at the same thrift store.

I had seen painted lamp shades online, and the shade was fabric, so I felt it would accept paint well.

Initially, I planned to paint it a solid color. As I kept looking at the colors in the curtain to match it, I decided to try to duplicate one of the flowers in the curtain (which is actually a shower curtain from T J Maxx). If it didn’t turn out in a way I was happy with, I would just paint over it again.

This is the curtain with the flower I was copying. I took a picture of it and looked at it while I was painting/copying the design.

First, I practiced drawing the flower on paper with markers.

Then I practiced the design with paints on card stock.

I first painted the shade a solid light gray then drew on the white flowers then filled them in. I used acrylic craft paints, Apple Barrel brand (50 cents each at Walmart). Some of the colors required a little mixing to get the shade I wanted to match the colors in the curtain.

I’m happy with how it turned out. I may add more flowers with a little yellow later, or some little flourishes.

A friend who enjoys painting advised me to stop while I was happy with it and wait a couple of days to decide whether to add more to the design. I decided to take her advice. If I make any changes later I will share those too.

I hope to finish some some other projects for this room to share soon. I’m enjoying that the summer gives me extra time to work on house projects.

What are you working on? Hope you’re having a great summer!

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