Maybe You Don’t Know Just How Much You Need a Break Till You Get One (and reviews of the places we ate in PCB)

My two adult kids had given me birthday money for a beautiful condo at Panama City Beach for 2 nights. When I opened the card with the money in it, my son said, “Mom, you can’t use this for anything but the beach. Not for groceries.  Not for a bill.  Not for anything else, just for the beach.”

It was too cool for us, but we watched kids enjoying the pools.

Jessie, our youngest who has Down syndrome, really doesn’t like the beach so we rarely ever go.  Before kids, that was our happy place for sure.  When we couldn’t stay overnight we made lots of spontaneous day trips.  When our oldest two were little, it was a lot more work, but we still managed to go some and they enjoyed it too.  Once Jessie came along, because of her intolerance of heat and how hard it is for her to walk in the sand, we’ve pretty much given it up.

Both my big kids know how much I love the beach. Of all the places I can think of, the beach is the most peaceful and relaxing to me. Hearing the waves seems to almost instantly bring a feeling of peace and calmness.

I always feel close to God when I’m outdoors, and especially at the beach. It is such a magnificent display of His creativity and power.

My husband reminded me that it had been NINE YEARS since we went away without kids. Even though it has been 9 years, I still remember how much we enjoyed that time too. I still remember that we came home feeling so much more connected as a couple.  For a long time after that it served as a sweet reminder of , “Yeah, that’s kind of the people we were before kids.”  It’s good to remember that and yet sometimes hard when you’re in the trenches every day.

I found it hard to leave any of my kids when they were young, and that feeling has lasted longer with Jessie than the other two.   In the 23 years since we’ve been parents, other than when we were at the hospital having a kid, I think this may be only the 3rd time we’ve been away from all of them at the same time.  When I had a c-section with Jessie, the last night we spent in the hospital, Jordan (7) and Evan (5)  spent the night there with us.  Their last living grandparent died when Jessie was 7.  We didn’t have grandparents to keep them, and when there are 3 of them, well, there aren’t a lot of takers for that kind of babysitting.

This trip to the beach, Jessie was really excited to spend the weekend with her sister and brother in law, both of whom she completely adores.  Jordan took Jessie to a Valentine Dance on Friday, and to church then out to lunch at O’Charley’s on Sunday.  This was the first time she had spent the night at Jordan’s since they bought their house, so I know next time (and there will be a next time!)  she will feel even more comfortable spending the night.

Jessie really enjoys time with Jordan without me, because without meaning to, Jordan and I tend to monopolize the conversation a lot of the time. When Jordan was giving me the weekend highlights, she said Jessie had expressed to her and Josh how much she appreciated them “being so kind to her”. Where does she get these grown up things?!

Jessie texted and we facetimed (brief each time) throughout the weekend because Jessie just likes to stay in touch and know what we’re doing.  We didn’t mind.  I could hear in her voice each time that she was enjoying her time too.

We had no explicit plans for what we would do once we arrived at the beach. When we talked about it in advance, since rain was on the forecast for the whole weekend, we thought we might want to find some shopping or something else to do.  Maybe even go to a movie. We didn’t do any of that.

The first moment that we stepped out onto the balcony looking at the ocean and listening to the waves, it was like Jay and I let out this huge exhale.  We had known we needed a break and some time together, but I don’t think we had realized just how much.

After we got our stuff unloaded we went in search of a late supper.  See later in post for details on all the neat places we found over the weekend.  When we got back, it was getting late but we had never stayed at this condo before so we just wanted to take a look around.  We met the nicest couple while we were out.

As we passed by the hot tub, an older gentleman asked if we would turn the timer on for them another 15 minutes. I don’t know if we ever introduced ourselves or learned their names, but we enjoyed chatting with him and his wife for a good few minutes. We learned that they had raised 4 kids and had 10 grandkids. For the last 4 years since they had retired, they came to this condo at Panama City Beach right after Christmas and stayed for 2 months. Wow. #lifegoals. He made sure we understood that they had only been married to each other. They have friends with a blended family that have 15 grandchildren between them. He was proud to let us know all 10 of those grand babies come from just the 2 of them and their 4 kids. They were here all the way from Manitoba Canada. We noticed several Canadian car tags in the parking lot but most were from Ontario.

All day Saturday and all day Sunday, with the exception of when we went out to eat and get a few groceries, I sat on the balcony, listening to the loud and peaceful roar of the waves. The sound of the waves is medicinal, truly.  It was a little cool and windy so I stayed cozy wrapped up in a soft blanket. We were on the 6th floor, just high enough to have a good view without being so high as to feel too far from the beach. When I wasn’t reading or watching the waves I enjoyed people watching.

Some of the time I was reading The Rest of God:  Restoring Your Soul by Restoring Sabbath. (This is an affiliate link)  It was the perfect location for reading this book.  I didn’t finish it yet, but it’s good!

For supper Saturday night, I  marinated and pan fried a steak (it was raining so we couldn’t grill) and baked sweet potatoes to go with salad I had brought from home.  We ate and went right back to the waves.

Only when it stormed did I come inside and then we watched tv together.  While it stormed, Jay and I watched Golden Girls and then a show about building log cabins that was really quite hilarious.  How is a show about building log cabins hilarious, you ask?  The owner of the company and several of the workers kept talking about how lazy one of the workers was until he quit. His laziness, they speculated, had something to do with his recreational activities that had also cost him his driver’s license. Then, they decided that although he was lazy they still needed him so they apologized and took him back. And, oh yeah, the bosses ex-wife was now married to one of his best employees.

Think, As the World Turns meets Log Cabin Builders.  They were acting like a bunch of catty high school girls talking behind each others back and then making up.  They did amazing work as log cabin builders and the combination of that with the soap opera work environment made for good entertainment.  It really was quite entertaining on multiple levels.

See how foggy? It was the same looking out toward the ocean. Didn’t impair my enjoyment one bit!

Sunday morning it was so foggy you couldn’t see very far out into the ocean.  I don’t know that I’ve ever seen the beach quite so foggy as that. A little while later it was back to normal.  I enjoy an ocean view though no matter what the weather is.

We got in a short walk Sunday morning before it rained and then it rained the rest of the all day. Even though it rained most of the time we were at the beach, I don’t think there was one thing that could have made our beach trip a bit better.  It made us rest and rest was what we needed most.

I remember when our oldest kids were young and we would go to the beach with my mother in law. She would sit on the balcony and we would always encourage her to come down with us to the beach or pool, feeling like she was missing the beach by being on the balcony. But this trip I got it; I really enjoyed sitting, just resting, a lot of that time alone.

Some of the time Jay was inside watching tv. That’s more restful to him than it is for me. We enjoyed our time together tremendously, but  we also felt comfortable to do  what we each wanted to separately some of the time.

Other than when I made us a quick breakfast, I stayed outside on the balcony again till we were starving.  We went to a place practically across the street from the condo, Hammerhead Fred’s.  We might not enjoy this place during peak season, but on this off season day it was quiet and not very busy and the food was delicious.

When I’m at home, I always feel the call of undone things.  Even if I don’t answer the call, I feel the weight of them.  While we were at the beach there were no undone things.  Nothing else I needed to be doing, rest was the plan. I can only rest this completely when I’m away from home.

I love being at home, and I mostly don’t mind that we can’t afford to travel often.  But this trip reminded me just how good it is to get away.  Away from our responsibilities of home and together just as a couple.

I knew it would be good to get a break but it wasn’t really until we were there and I relaxed so completely that I realized just how much we both had needed it. We operated solely on our own agenda.  We ate when we wanted to.  Slept when we wanted to.  Drank extra coffee.  Read, prayed, sat completely still for hours at a time.  Nobody called my name,  interrupting my reading or prayer.  I wiped no-one’s butt but my own.  Sorry if that’s TMI, but that was one of the highlights of my weekend.

Jay said when we got home that it was good to be home.  He read my face and could see I hadn’t been as ready to come back yet.  I hope we won’t wait nearly so long to do this again.  It was good for us in every way.

When I think back on it, I can picture in my mind the exact view and the way the waves sounded.  I’m going to hold onto those sweet memories we made, both as a reminder of a good time and incentive to not let so much time go by before we go away together again.

It was pretty windy and my and collar was blowing up into my face each time we tried to take a picture so Jay is holding my collar down here 🙂

I came back feeling the most rested I can remember being in a very long time.  Physically, emotionally, spiritually.

We’ve had a good week since we’ve been back and it was so good to start the week feeling so rested.  I’ve prepared Jay though, that since we’re nicely rested,  this upcoming long weekend I have plans for us to accomplish a lot of things around the house.  Real life 🙂

Till next week,

Josette

For Those of You That Visit Panama City Beach:  The Places We Ate and the Stories that Go With Them

Surfside Shrimp Co. (on Thomas Drive)

Friday night as we tossed around options for eating a late supper, I really wanted some raw oysters. When I think of the beach, I think fresh seafood.  Not too far from our condo on Thomas Drive, we came across Surfside Shrimp Co., a market where they sell seafood, serve steamed seafood, and have an oyster bar.

There was only 1 table to sit at other than the bar. We were surprised by that initially, and pondered going somewhere else, but decided to stay. Then when we realized they only had oysters and steamed seafood and no burgers, etc, Jay and I had to negotiate. He doesn’t love oysters the way I do; he can take ’em or leave ’em most of the time.  Not much negotiating really, he was super sweet to do anything I wanted to do all weekend.   It ended up being such an enjoyable time and the oysters were SO delicious I’m glad we decided to stay.

Since Jay doesn’t love oysters, so we thought he could have a beer while I ate oysters  then we would go to Waffle House for him and I would drink coffee while he ate.  He actually ended up enjoying a few oysters too and then we drove through Wendy’s to get him a burger on the way back to the condo.  We were telling our waitress how the oysters were so much better than some we had a few weeks ago in our hometown. We couldn’t believe how much difference there was, how good they were.

The owner came over and and explained that the oysters from Apalachicola (the place we usually hear most oysters come from) didn’t have good oysters right now because of storms. These were from Cedar Key FL. They were THE best oysters we’d had in a very long time. “Clean” and “fresh” tasting were 2 words Jay used to describe them. They were also huge and good and salty. Perfection.

When we’re out of town and not feeling in any hurry we enjoy talking to people we meet along the way.  Y’all know I like to know everyone’s story.

We enjoyed a conversation with Frank, that owns Surfside.   As we talked we learned he was from New York. I asked him how he ended up so far south from New York. He told us a little of the history getting from NY to FL and said the main reason was…he hated New Yorker’s!  We busted out laughing. I don’t know why, but that just struck our funny bone. A New Yorker that hates New Yorkers.   He told us that he had worked in a lot of hotels before he ended up in Panama City.  Evidently, a lot of New Yorkers worked in this one hotel, because he said the hotel put up a sign that said, “We don’t care how you did it in New York.”

We very much enjoyed our meal and visit at Surfside Shrimp. Co.  From the sweet high school aged girl who took our order, the great oysters and our enjoyable chat with Frank, this is a place we will want to visit again.

FYI, they have beer and soft drinks but no tea or diet drinks.  We were ok with that on this visit but good to know.

Shane’s Rib Shack

On Saturday, we ventured out to eat and then a trip to Walmart.  We were in search of some place locally owned again, preferring not to eat at a chain restaurant.  Well, we ended up at a chain, but we didn’t know it at the time.  Even so, Shane’s was a great choice, we were glad we ended up there.

The pictures we saw of their hamburgers on the windows  looked pretty amazing.  The pictures always get us, don’t they? We asked the sweet young lady at the counter if she had any recommendations and asked about the burgers.  She said the burgers were made fresh when you order so they take about 20 minutes.  We each ordered their Cowboy burger which comes with little fried onion rings on it.  I had mine all the way.  Ya’ll, when you order a burger, they rarely ever look the picture.  These actually did!  Right down to the pretty and curly edged leaf lettuce.  The burgers were amazing.  Best burger we’ve had in a good while.

While we were in Shane’s there was a young family across from us with 3 little ones.  An infant, a toddler and the oldest was a little boy no older than 5, my guess would be 4.  I enjoyed watching him; he was so cute.  He was holding a fork straight upright in front of his face eating what appeared to be a chicken nugget.  I heard him ask, “Why Mommy?” a couple of different times.  For some reason, ever since Evan has made it through those young years I have enjoyed watching little boys.  Little boys are a mess and I find them so fascinating….as long as they go home with their mamas 🙂

A few days later when I ate at Shane’s Rib Shack in Enterprise, AL, the ribs were equally delicious, flavorful and very tender, the meat pulled easily off the bone with a fork.  I might have a little crush on Shane’s Rib Shack.  We will definitely be going back.

Hammerhead Fred’s (Thomas Drive)

We went to Hammerhead Fred’s for a late lunch on Sunday.  If it were peak season I don’t know that this would have been a place we would choose.  With the outdoor bar, the environment might have been louder and a different vibe during the summer, but on this day it was very enjoyable. We shared a wings appetizer first that came with celery and carrots. Then we shared a fried shrimp platter that came with a salad and we had a side of sweet potato tots with it.  For this type of place we were surprised at how fresh and good the salad was with a variety of lettuces in it.  The meal was delicious.  The graffiti everywhere (purposeful) made me feel a little bit like if I stayed too long I would want to clea

We really enjoyed our weekend so much and all of the places we ate while in PCB were very good.  I wanted to give you a description in case you’re visiting Panama City Beach soon you might give one of them a try.

Down Syndrome: Blood Tests We Do Each Year and Why

I posted earlier about Jessie’s alopecia (hair loss). Evidently, since the last time we saw her pediatrician,  Jessie has more hair loss.   Or, it was just more noticeable to him than before since she has a large bald patch right in the front. Her doctor seemed surprised, and before I could bring it up he did.  He said he wondered if the hair loss was an indicator that her thyroid dosage needed to change and he also wanted to check her for other auto immune issues.

First of all, before I share anything else, I want to say I’m no expert.  I’m just sharing what I’ve learned as a mom who tries to educate herself on issues that affect my child’s health.  I’m not even what anyone could call a “health nut”.

I’ve had friends tell me they haven’t thought about testing vitamin levels, which is why I’m sharing.  This list isn’t meant to be a list of all that you should check, this is just what we are currently doing. So much of what I’ve learned on this journey is from other parents, so I try to pass on what I’ve learned if it might help someone else.

Although there is a lot known about Down syndrome, there’s still so much that isn’t well understood.  I find this new research showing differences in the immune system of a person with Down syndrome really interesting.  While I don’t understand all the ins and outs, it’s clear that the immune system is a key player in many of the health issues common to people with Down syndrome.  It has been known there is something different about their immune system, just not exactly what.  This research has led to clinical trials that hopefully will lead to solutions for some of these health issues that affect many people with DS.

Considerations for When you get Results for Vitamin Levels Testing

  1. I have learned that often doctors or their nurses will say a vitamin level is “normal” when it falls within normal ranges, but might not be optimal. If you ask the question if its okay to be at the low end of a large normal range(for example 30 for a range of 30-100) you might learn that it’s better, or optimal, to be in the middle of the range, but if you don’t ask that question you might just get the answer of your results are normal.  Even if they are barely below normal, I’ve been told they’re normal.
  2. I always ask for the number (not just that it’s normal) and ask for what the normal range is and I write it down.  For most vitamins, you really do want to be more middle of the range.
  3. I’ve had the experience of a nurse telling me I could give Jessie a multivitamin when her B-12 was just barely below normal.  (This was when we were between pediatricians and a nurse I didn’t know.)  Our previous doctor had Jessie taking a B-12 supplement.  I felt confused when she told me this and while on the phone we compared the previously doctor recommended B-12 supplement  to the multivitamins I had on hand.  The amount in the multivitamin was nowhere near what the doctor had previously recommended (at that time had been 25 or 50 mcg).  She then said, well, you can just keep giving her what he told you before.  The amount in the multivitamin wouldn’t have been enough to correct a deficiency.
  4.  See #3…..ASK QUESTIONS!  And if you’re not sure about the answer, ask some more.  If they don’t like questions, find another doctor who doesn’t mind them.

The Tests and This Year’s Results….

CBC

Every year Jessie has a CBC done because of the elevated risk for leukemia in people with Down syndrome.  Hers is normal this year as it has been every year.

Thyroid

In addition to Down syndrome being a risk factor for thyroid issues,  there is a strong family history on my husband’s side.  Jessie has been on thyroid meds for hypothyroidism since she was 5 or 6, I think?  It’s hard to keep up with it all, she was pretty young and seemed tired all the time.  Now, I know we should have also had a sleep study when we were looking for why, but that wasn’t commonly known then.  Because of the family history and symptoms that might be related, her pediatrician at the time said he felt comfortable treating her when some doctors might have chosen to watch it and see what happens.

My husband had been on the same medicine for hypothyroid for many years, so I was familiar with both the condition and the medicine, and I felt comfortable with that.  As years have passed, she still has a low energy level and symptoms that could be related to her thyroid,  so I have been glad to not have that question, to not always be wondering if things might different if we were treating her for it.  Her energy is definitely better now that she is on CPAP, but she still has a low energy level.

Every year we have her blood work done to check her thyroid levels.  I’ve read that it’s common to have dosage changes during puberty, but Jessie’s dosage has never changed since she started on medicine.

When we got her results this year,  her free T4 was nicely in the middle of the range.  The TSH was slightly toward the higher range of normal, but well within the normal range, so no medicine changes at this time.

This means thyroid issues are eliminated as a cause of the hair loss.  The blood tests related to immune system came back as normal too.  We don’t do those every year.  We have had them once before but it’s been several years.

We Check Some Vitamin Levels and Here’s Why

For several years now, we’ve also been checking some vitamin levels when they draw her blood for the thyroid testing.

There’s a lot on the internet about different supplements specifically formulated for Down syndrome.  They’re expensive.  If they were affordable for us, I would try them to see if they made a difference for us.  But they aren’t affordable for us, so I’ve tried to educate myself on what vitamin levels people with Down syndrome have a tendency to be deficient in.

I’ve asked friends who are more knowledgeable what they have tested, what their experiences have been and I’ve done a little reading.  I haven’t done nearly the research or reading on this that some have.  Again, I don’t claim to be any expert. If you know other things we should check that aren’t listed here, please share in the comments!

If you haven’t ever checked these, I would say it’s a good idea to check them at least once to rule it out.  That’s exactly how it became something that we routinely check now.

B-12

I don’t know how common it is for B-12 to be deficient in people with Down syndrome in general, but Jessie’s B-12 has tended to be low, or only just barely within the large normal range unless we supplement.  Her numbers do always come up when we supplement.

Jessie was only 6 or 7 when I noticed she had several gray hairs.  I asked about checking her B-12 because I read that sometimes gray hair in children was associated with low B-12.  Although he thought it highly unlikely Jessie’s B-12 was low, because she loves meat and eats it every single day,  he had no problem checking it for me.  He was pretty surprised when her B-12 results came back at just below normal.  The normal range is HUGE for B-12 so hovering around the bottom isn’t great.  Since that time Jessie has taken B-12 in varying dosages and we usually check it once a year.

This time her B-12 was the highest it has ever been, 1100, which is actually elevated.  She’s never been in the upper range before! The normal range is 193-986.   Her doctor said it wouldn’t hurt her though, that her level is fine.

At 16, she’s an adult weight and I give her adult vitamin dosages.  I buy the Member’s Mark brand at Sam’s (sublingual, melts on or under the tongue) and although I’ve read much about sometimes store brands vitamins aren’t good quality or well absorbed, the B-12  in this brand is clearly working for us!

Vitamin D

Her vitamin D level was 29, which is one point below the beginning of the normal range.  For vitamin D, 30-100 is seems to be the most widely accepted normal range.  This is the range used by both my doctor and Jessie’s pediatrician.  My doctor said he prefers to see a number in the middle of the normal range.

Although I try to stay on top of things, I feel like I constantly find something I’ve missed.  I haven’t understood the connection with Vitamin D to the immune system.  These links from National Institutes of Health ( a complicated read with medical terminology)and Harvard ( this one is easier to read) show just how important Vitamin D is to the immune system.  These articles make it clear that low Vitamin doesn’t just make you feel fatigued, that Vitamin D is really important to a healthy immune system.

In addition to the possibility of Down syndrome affecting her absorption of Vitamin D there are other factors that make Jessie more likely to have a D deficiency.  She doesn’t eat the foods that are good sources of vitamin D, she doesn’t like to spend time outside, and she’s significantly overweight.

You CAN get too much vitamin d and that can be a problem, so you shouldn’t supplement vitamin without having yours tested.  Mine has been low also, so I’m giving Jessie the dosage that my doctor recommends, 10,000 units per day (with a meal that has some fat in it)  until we’re in the normal range. In the couple of weeks leading up to Jessie’s blood test I had already started being more consistent, so I have to wonder if her level previously was even lower, which makes me feel terrible.

My doctor retested me after 6 months.  It takes a while for the vitamin D to come up once you start supplementing.  He said I was in no danger of getting too much in that time frame before we retested.  Once I got back to the normal range my doctor bumped me down to 5,000 units per day. I will do the same for Jessie although this is more than what I’ve read as a daily recommendation.

Zinc

We haven’t always tested for Zinc and did last year for the first time. Zinc is another one that’s important to the immune system.  I didn’t realize it wasn’t on the the list for this year and it wasn’t retested. If you haven’t before though, this is a good one to check.

If you have information or experience to share I would love to hear from you!

This was a long post, it’s colder than usual here, and I seriously need a cup of coffee.  A friend gave me some Dunkin’ Donuts white chocolate peppermint coffee and it’s calling my name.  Hope you’re having a great week!

Josette

The Dreaded Annual Blood Work

This week I finally took Jessie to have blood drawn. We do this annually and I think I dread it as much as Jessie. Probably more, because she only gets a little advance warning and I dread it well in advance. I don’t do well with any of my kids being in pain.

It was right before Christmas when we saw her pediatrician and he ordered the bloodwork.  Because of billing issues and which lab the blood would go to (from that office) we didn’t have it done that same day. He put the order in and said we could stop by the Dothan office any time. She cried when we talked about it, anticipating that it would hurt.

It’s almost always hard to get her vein.  They have to wiggle the needle around once its under the skin and it’s painful.   It wasn’t easy this time either, but we had a great nurse that kept her talking about wrestling the whole time.  He said her veins were tough to get to, deep under the skin. In explanation, he said the needle was about all the way in (a pediatric butterfly type) when he got through her vein.

There were no tears on her part which meant tears weren’t required for me either.  I usually cry if she does when she has blood work, because she has a high pain tolerance. If she cries it really hurts.  There were no tears this day.

Jessie and I had gone to lunch with my sister, her Aunt Debbie, right before we went to the lab. I always promise Jessie something to look forward to afterward like going out to eat (her favorite thing to do!) or ice cream, whatever works at the time. Since we just ate lunch I was stumped as to what to bribe inspire her with. Jessie loves having her own money. I told her if she tried to be brave I would give her $5.

In my mind, trying to be brave didn’t mean not crying if it hurt. Trying to be brave meant not crying and making me feel terrible before we got there and while waiting.

I know it hurt, but she was the sweetest bravest thing. So grown up about it all. I couldn’t be more proud of her.

She has always been a good patient. Just like with my other two, I’ve always been able to talk to her and if I told her something would not hurt, she knew she could trust that I was telling the truth. If something was going to hurt a little I would be honest about it. That made her not feel anxious at other appointments that weren’t going to hurt.

It’s just the last couple of years that Jessie has anticipated events like this and worried over them in advance. For that reason I give her a little advance warning, but not too much time to keep thinking about it. I told her toward the end of lunch that we were going to the doctors office next.

Aunt Debbie waited in the lab waiting area while the deed was done. She could hear Jessie and the nurse talking and didn’t hear any crying. I shared with her all what the nurse had told me about the difficulty of getting her vein and just how brave Jessie was.

When we got out to Aunt Debbie’s van, she handed Jessie a ten dollar bill and told her how proud she was of her. Jessie really likes knowing that adults think well of her. She likes knowing Aunt Debbie finds her brave and she really likes money. I told Debbie that Jessie is probably going to request that she go with us to every appointment of this type hoping for another $10!

This year the appointment wasn’t nearly worth the amount of dread I had put into it, thankfully 😊

In next week’s post I will share what tests Jessie has done annually and why.

Till next week friends.

This Christmas With Jessie

With each of my kids, I have enjoyed watching their personality develop.  I love seeing them become them become their own person, pondering the ways they are like the others in our family, and the ways they are distinctively themselves.

I’ve noticed some big changes in Jessie during the Christmas season in the last couple of years. I was just talking with a friend about the sweet changes this year that reveal ways that Jessie is maturing.

In addition to maturing, Jessie’s own individual personality is also becoming more evident. I enjoy watching her become her own person, with distinct and specific fashion choices, and other kinds of likes and dislikes. Although she is greatly influenced by us, her family, there are some things that are just her. I don’t think they’re about Down syndrome either, they’re just part of Jessie’s personality.

For instance, I have learned that gifts is a primary love language for Jessie.

It isn’t the cost that’s important, but she loves to receive and give gifts.  No matter how small, when I’ve been away from home and bring her a treat she acts like the recipient of a winning lottery ticket.  Hands clapping, grinning from ear to ear.  She thanks me profusely.  I get the same reaction for Icees, a stop by Sonic for a slushy with popping candy or sometimes even just for doing her laundry.

When she acts like you’ve given her a million bucks is it any wonder we get Icees too much?  She expresses her very sincere appreciation when she’s been sick and I take care of her.  Or when I do something like bring her a drink to her room as I usually expect her to be independent about such things.

I’ve known this for a while, but it has become increasingly noticable that Jessie enjoys giving almost as much as she enjoys receiving. She has wanted to purchase gifts from her, separate from the ones we give as a family to her siblings and cousins and always wants to buy gifts for her friends. At first it felt really stressful that I couldn’t indulge her in this, we simply can’t afford to buy 2 sets of gifts. And we can’t buy gifts for all her friends. Now, I’ve found ways for her to feel more like the giver of the gifts we buy as a family.  I tried to do that in years past, but she just wasn’t able to keep the gifts secret so it just didn’t work out.

Two years ago Jessie simply could not keep a secret if she knew a gift I had bought. She would snuggle up with her big sister to go to sleep and would say, ” I can’t tell you that we got you a present.  I can’t tell you that we bought you earrings.”  She just couldn’t stand it.  In her excitement, it was truly beyond her control to hold it in. Her communication skills have grown too.  She now will say, ” I bought you a gift and can’t tell you what it is.”  It helps that she isn’t sleeping with her sister these days because bedtime snuggling is the most vulnerable time for the secrets to escape.

Last year I didn’t let her know what gifts her daddy and siblings were getting because I didn’t want her to spoil the surprise. She really didn’t like being excluded. I honestly think this has given her the determination to keep the secret so she could be in on the excitement of shopping and then wrapping the gifts.

She so desperately wanted to buy gifts this year. She kept pestering me about it. She kept saying we needed to go Christmas shopping.  I decided to give her another try. I hoped she could keep the gifts secret.  We talked about it and I explained she could only help shop if she wouldn’t tell the recipients about their gifts. Although I didn’t feel sure she could keep the secrets, I  finally decided it meant so much to her that I had to give her a chance.   It wouldn’t be the absolute end of the world if she let something slip.

She knows most of the gifts that her siblings and our extended family are getting. She has done some of the shopping with me and has helped me wrap most of them, so she feels more like the gifts really are also from her. I can tell it hasn’t been easy for her, but to my knowledge she hasn’t given away any secrets and we’re just days away from Christmas! I’m so proud of her!

She even spent some of her own allowance to buy a small gift for a couple of her young cousins.

Last year, she wrote most of the gift tags. Partly because the space on the tag is small, and partly because she wanted to be the giver of the gifts, the FROM just said Jessie instead of all our names. She enjoyed that. She did that on some of the gifts again this year.

Another funny thing…..

When we were shopping this week at Walmart I bought her a couple of shirts and a couple for myself. In past years, when she’s asked for things during December, I would typically say, “It will have to be a Christmas present. You will have to wait till Christmas and I will wrap it and put it under the tree.”

So, when we talked in the dressing rooms about which shirts we were choosing, she spontaneously asked if she could wrap the 2 shirts I picked and put them under the tree. She seemed a little tentative when she asked.  The girl just wants to give gifts! Then she asked if I was going to wrap her new shirts. This time I actually hadn’t planned to.  I asked if she wanted me to and she said yes. Most kids would want the clothing right away. She really wanted to feel that she was getting a gift. Hey, that works for me!

We made some accommodations that made it easier for Jessie to enjoy shopping and wrapping with less frustration.

  • When possible Jessie has used the motorized scooters to enable her to enjoy shopping for longer. We also have a wheelchair, or use ones provided in store when needed. Without this, Jessie can’t shop for long before she doesn’t find it enjoyable because her feet hurt.
  • Jessie started off the season so excited to wrap but finds it frustrating after a while. She didn’t want to use gift bags in the beginning of the season, but after we had done some wrapping she decided using some bags was ok.
  • I have some pretty decorative boxes for clothing (Dollar Tree!). For the shirts she was giving me, she chose pretty decorative boxes that didn’t require any wrapping. She didn’t even want to tape them. She was tired of the tape dispenser at this point 🙂

Jessie mentioned quite a few times from Thanksgiving through the next few weeks that she wanted to go shopping and buy me a gift. She knows I like to wear earrings and she wanted to buy me some.

Finally, she took matters in her own hands.

She called her big sister and asked Jordan to take her shopping. They went the next night, just the two of them, to eat supper together and shop. When she left with her sister, she looked so grown up and sassy with her Vera Bradley cross body purse on and her money in her wallet.  She looked, felt, and acted so grown up about it all.

This whole season her sincere desire to give has been so sweet.

She loves the way she feels when someone gives her a gift and she wants to make others feel the same way. That’s a pretty mature thought process. I’m enjoying these grown up sweet changes in my girl.

One last sweet thing… the other night after we had been shopping and found those new shirts, as she walked by the recliner where I was sitting, she told me I was the best mom ever. Then as she teared up, she said, “I’m bout to cry.” Of course, that made me cry.

I hope your Christmas is full of such sweet blessings. Merry Christmas!

DS Coop: Decorating Gingerbread Houses

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas!

Josette

Down Syndrome and Alopecia Areata (hair loss)

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

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

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

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

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

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

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

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

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

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

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

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

Josette

Jessie and Ashley fundraising for Special Olympics

Learning How to be a Friend

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope you have had a great Thanksgiving!

Josette

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

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

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

Thinking Skills Related to Money and Purchasing

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

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

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Keeping up With her Money

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

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

Counting and Learning the Value of Money

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

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

Using Money as a Motivator

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

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

Jessie’s Allowance and Responsibilities

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

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

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

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

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

Final and random thoughts….

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

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

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

Hope you’re having a great week!

Josette

 

DS Coop: What Can you Learn Making Healthy Muffins?

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

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


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

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


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

Each of these activities are great for fine motor work:

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

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

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

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

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

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

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

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

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

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

That’s making me want some muffins.

Till next week,

Josette

 

 

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

Our First Down Syndrome Homeschool Coop Day

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

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


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

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

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

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

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

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

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

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

***This post contains affiliate links.  See disclosure here.  I only recommend products I personally love. ***

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

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

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

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

Till next week,

Josette