I'm Back! I think :)

We've gone through such a season of busyness in our lives in past months, there just hasn't been time for blogging.  In the past I've gotten bogged down because I felt I couldn't post some of our homeschooling adventures without adding photos.  My computer is ancient and slow, so it just didn't happen.  I DO hope to do those things because I still find there to be a shortage of blogs by mom's homeschooling their children with Down syndrome and I so enjoy reading other's ideas, especially the ones with photos :)  However, I love to share and chronicle for myself our family life and Jessie with all her Jessieness ;)  In a lot of areas of my life as I've gotten older, I've decided DONE is better than perfect- never- finished.  Jessie does so many cute and funny things on a daily basis that I really want to keep a record of them, even if noone else ever reads them.

I have recently been DVRing Paula Deen's cooking show and sometimes Jessie likes to watch it.  One day when she was helping me cook, she said, "These are our dry ingredients."  LOL  I'm not sure whether she does  understand the concept of "dry" ingredients.  She might. 

This Christmas season when we were out shopping Jessie saw some pots and pans with Paula Deen's picture on them. She told me she thought I needed to have them.  I told her I didn't have room for them in my kitchen, that my kitchen was too small.  The conversation went on a bit....she has not forgotten that conversation ;)  She's brought it up several times, that she wants me to have Paula Deen's kitchen.  She told me last night at bed time that I NEED to have Paula Deen's kitchen.  A big one.   She wants to give me Paula Deen's kitchen for Christmas :) 

The Best of Friends

I loved watching my teenagers tonight.  I'm not through mothering them, of course, but it's a relief this far down the road to see all our hard work hasn't been for nothing :)  I've always told them :  friends may come and go, but you're stuck with each other forever.  I've always encouraged them to feel responsible (within healthy boundaries) for sticking together and helping each other.  Tonight I saw Evan excited to be able to show Jordan some self defense moves (he'd just learned them) and I saw that Jordan admired and respected the knowledge Evan had.  Afterward, talking to Jordan about it, SHE SAID how he just seems so grown up.  It struck me that she's proud of how he's growing up. What mixture of emotions to see my babies, MY babies, my BABIES so grown up.  I'm constantly looking, noticing, memorizing almost, the details, of their grown-up-ness, trying to hold onto the moment. I know teenagers are "supposed" to be such monsters, and mine do have their moments, but like the other stages of their lives I am watching them in awe, a mixture of love and pride and sadness for the time that's gone, I can't get back...and anticipation of what comes next. 

When they were little I always hoped that when they were older, they'd be like they are now.  They can still fight like cats and dogs!! But, they are the best of friends.  I am thankful. 

Happy To See Poop? Our recent GI issues.

Jessie has had significant reflux for as long as I can remember.  At one time or another she has taken Zantac (the mildest, this was the first reflux medicine she took), Prevacid and Prilosec.  If we owned stock in Mylanta or Maalox.....you know.  A year or so ago she started having loose bowels, all the time.  Not like you expect with a virus (not as many times per day), no fever, didn't feel sick.  Finally, after this went on several weeks, we determined the culprit was the Prevacid she was taking.  Her gastroenterologist said sometimes drugs in that class, proton pump inhibitors (think I got that right :), after taking them a while can cause diarrhea.  We switched to Prilosec and in about 3 days, we saw that had indeed been the cause, as the diarrhea stopped.  Prilosec and Prevacid are both proton pump inhibitors, but I guess sometimes you can take them for a while before that symptom might arrive.  Prior to this, Jessie had been taking Prevacid, off and on, for several years.  So now, after a little more than a year of taking Prilosec, the same symptoms started again.  It's always tricky at first cause it's not that abnormal for Jessie to have a little issue for a couple of days here and there with no sure explanation.  After more than 2 weeks of this again, we have changed to a new drug, Axid, in a different class (not sure what) but it isn't a proton pump inhibitor.  Finally, we have poop with shape to it.  That makes me very, very happy :)  Normally, it is rare for Jessie to have poop accidents, but when all this was going on, it was constant.  I finally decided that her tummy must have felt unsettled for so long that she no longer could interpret the signal.  That was a sad thought that my baby's tummy had been bothering her enough that she couldn't tell she needed to poop. 

For any of you reading that might have a child taking a proton pump inhibitor, or are taking one yourself, it's a good idea if you've taken it a while, to have your B-12 checked.  Never mind that the doctor may say it isn't necessary :)  Initially, I had her B-12 checked because she had a few gray hairs and alopecia, and a google search revealed sometimes low B-12 is the cause of gray hair in children.  AFTER we discovered her B-12 was at the very lowest within the very large normal range, another google search showed that with the great numbers of people now taking this class of reflux drugs they are finding B-12 deficiencies.  Jessie now takes a B-12 tablet and as long as we take it semi-regularly her B-12 comes up to the middle of the normal range.  If we stop it it goes back down.

I have found it to be SO important to have a pediatrician that really listens to my concerns, and will go along a bit with me.  Jessie's pediatrician checked her B-12 for me after I told him I read that gray hair is sometimes associated with low B-12.  He agreed to check it to put me at ease, but assured me that it is rare to find a B-12 deficient child that eats meat.  We found one!! Jessie is a meat lover!

I share the poop story with you not cause I want to gross you out but because I know reflux is pretty common amongst younguns with Down syndrome.  If you have dealt with reflux and have any suggestions that might be helpful please leave me a comment!

A Mama's Heart Overwhelmed

It took me by surprise, the overwhelming range of emotions I felt watching as Jessie participated in the children's musical at church tonight, "Peter Cotton's Tale."  I'd watched the kids many times as they practiced.  I'd helped in the sound booth.  So many thoughts as I watched tonight. I didn't expect to be so emotionally affected after having seen it so many times :)

One of the main thoughts I had was, most of the members at my church probably aren't familiar with the term, "inclusion."  They've probably never given that word a thought.  What my church knows is LOVE.  Because of love, my church family does such a beautiful job of including Jessie.  Tonight, Jessie sat beside Mrs. Wanda.  Mrs. Wanda is the music minister's wife, she has been Jessie's Sunday School teacher, her Awana teacher and has known Jessie from birth.  Mrs. Wanda sat there beside Jessie, cueing her when to stand, when to sit, and when the last song came on Jessie was able to follow Mrs. Wanda in doing the motions for the song. Jessie had a small chair (the only one that had a chair) beside Wanda.

We came to this church when I was six months pregnant with Jessie and did not know she would have Down syndrome.  All the folks that teach her and work with her have known her since the day she was born. My church family may not know what inclusion is, or have any idea what a hot topic it is, but they are good at it.  In Sunday School, Vacation Bible School, and Awana, they expect from Jessie whatever is her best.  They make adjustments and accommodations when they are needed. She is helped when it is needed but they all are proud of how much she can do herself.  When she was younger I was pretty much always with her, that was my choice.  As she got better at being able to communicate I slowly backed off.   

There's a lot of talk about inclusion, but often, I don't think what's called inclusion is really inclusion. To just be present as part of the group, in my opinion, doesn't always count as being included.  I found this definition of inclusion that I really liked:  “Inclusion is a sense of belonging: feeling respected, valued for who you are; feeling a level of supportive energy and commitment from others so than you can do your best work.”  Disabilities or not, that's what we want for all our kids. 

Watching Jessie tonight, my thoughts went back to a conversation I had with the Lord in the first day or so after Jessie was born.  I knew so little about Down syndrome.  Now some of the thoughts I had then I realize to some of you might seem exaggerated....but initially, I had no idea what Down syndrome meant.  I told God that whatever this meant for our family He was going to have to help us accept it.  That He would have to help us through.  I told Him if I were to be feeding her every meal for the rest of her life, if she were to be completely dependent on us, whatever it meant, He just needed to help us.  Tonight, watching, I thought about those thoughts, that conversation.  I watched my beautiful pig-tailed baby sing, "it's such amazing grace, it's such amazing mercy, it's such amazing love for me." She sang almost every word of the song, "Because of Your Love" and did motions with the song.  My heart was so full and overflowing.  The combination of the gratitude I feel for the Lord for all he's done for me, the pride in seeing my baby do so well and sing her little heart out, and the love I feel for my church family for the way they've loved her and us....this Mama's heart was overwhelmed with love and gratitude. 

Keepin' It Real

In writing this blog, it is always in my mind, who am I speaking to?  A new mom looking for blogs about Down syndrome?  A mom thinking about homeschooling their child with Down syndrome?  A mom needing encouragement? A mom looking for specific ideas that might be helpful in their homeschooling?  Friends and acquaintances that really want to understand?  With the exception of the last one, I have been each of those people, looking for websites and blogs for each of those different reasons.  The blogs I most enjoy have given me some of each of those things.  Encouragement, homeschooling ideas, a realization that there are others that feel much the same as I do...that there are those that face the same struggles and find some of the same joys of having a loved one with DS.   I feel most connected when the writer shares struggles as well as the blessings. When they seem real.  When I can identify with them.

In sharing our life on this blog, I am ever mindful of who is reading, and also the fact that they don't really know me.  It makes it hard to share some of the struggles.  I would hate to think that a mom looking for encouragement felt discouraged by looking further down the road and thinking about something they aren't ready to face yet.   As much as I'm concerned that someone might find reading the struggles discouraging, so might someone who is struggling find it difficult to read only the good stuff.  Might they wonder if everyone else with a kid with Down syndrome is making such a party of it that they are the only ones having a hard time? I  think that sometimes, as Christians, many of us think we aren't supposed to struggle in the way that we do.  That somehow, if we were stronger Christians, these things, these issues wouldn't seem so hard.  I've been pondering that lately.  Because there have certainly been times that I'm struggling (not always DS, sometimes it's those typical kids that are the problem :), or unemployment, finances, overcommitted with a lack of energy.  Now I'm whining, so I'll stop there :)

I do know this, "...that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28  Those who love him, called to his purpose, that's me! I take all things to mean all things; the good, the bad, and the ugly.  All things work for my good in the end.  They might not always feel good in the moment.  Sometimes they teach me endurance.  Sometimes they teach something I'll need later.  Even if I don't always know the why, I do know the who.  He's trustworthy.  He loves me.  He's promised to work all things for my good.  I'll trust that. 

As much as is possible I'm going to try to keep it real.  In doing so, know this....no matter what struggles I share, no matter what difficulties we face as a result of Down syndrome I love and accept Jessie unconditionally.  She is a gift, as all children are, to me, to our family.  We wouldn't change her if we could.  Sometimes, it's still hard.

Thinking of all of you.  Wondering whose reading......


  

New Realizations

Our kid has Down syndrome.  We've known this for a long time now :)  And yet, it seems that really understanding what that means happens over time. For each of us in the family, over time, there are some new realizations.  Sometimes, when they are new, it hurts a bit.  This past week was one of those times for Jordan. 

Jordan took Jessie along when she went to babysit 3 small children, all 6 and under.  Brave, huh?  She wanted Jessie to get to play with some friends.  She's played with these same children before and talks about them and wanting to go play with them.  This day, Jessie just never seemed to want to play the same things as the other children.  She was obsessively consumed with thoughts of a particular electronic game they weren't supposed to get out till after lunch.  The other kids were all fine with that.  Jessie just couldn't let it go and couldn't be satisfied with the other things.  Jessie's attention span....well, it ain't too long.  So, constantly Jessie was begging for V Smile.  She wasn't only being stubborn, which is certainly part of the equation.  She has no concept of how long till their lunch time.  No matter how hard Jordan tried to get Jessie to play cooperatively with the other kids, it just never lasted very long.  They love Lincoln logs...Jessie just doesn't have a clue why they're supposed to be fun.  We have some and she is so totally disinterested, even if I play with her.  I don't remember the other things they were playing but Jordan tried so hard, doing everything she could to make it work.  Jessie has a one track mind, a short attention span, inability to do some things kids younger than her can do, is inflexible, and stubborn.  Jordan called me crying and asked me to talk to Jessie.  Sometimes a little reminder from mom is all that is needed.  When I talked to Jessie she realized Jordan was crying and she began to cry.  Jordan had told her if she didn't behave she was going home. She started putting her shoes on and was ready to go home.  Jessie loves nothing better than playing with other children so that let me know that her frustration level was high as well.  I think she really was trying hard to "be good" but she did not want to play the things the other children were and didn't know what to do with herself. Jordan had a good cry on the way home.  We talked for while when she got home and then she said, "I feel like I just found out my baby has Down syndrome."  This day, she understood that Jessie wasn't trying to be uncooperative or behave badly but the situation was beyond her. No matter how much we love Jessie, sometimes Down syndrome is hard. 

Jordan is so mothering to Jessie.  I've said several times that I know Jessie will be well loved and taken care of by her siblings when one day her dad and I aren't here.  I know with no reservations that Jordan and Evan will willingly accept that responsibility and will always have her best interests at heart.  None of us knows what tomorrow holds.....so it is such a great comfort to me to know that.  Of course Jordan and Evan are just 16 and 14 so they love her like siblings do, not parents. Although the realizations of this day were hard for Jordan, it helped me to know that when that day comes, she will have the insight she needs to understand Jessie and know what's best for her.  I thank God for showing me that.

Squeeze the Charmin

It's precious to me that at 9 years old, if Jessie wakes up beside me (any excuse will do to get in mama's bed sometimes) that she looks at me and smiles when she sees that I'm there.  This morning she did that, then leaned over and kissed me.  I kissed her a minute then the dog started begging to go out, so I encouraged Jessie to stay in the bed a bit while we did Bible.  She hates to wait how long it takes before she can have the main tv in the living room, the one with all her shows dvr'd.  She went back to sleep I think for a few minutes.

"Good Morning, Mama".  "Good Morning, Mama".  Evan helps out, "Mama, Jessie said good morning to you two times".  She has learned, for the most part, to wait patiently or go watch tv in another room till we finish Bible, so although she spoke to me, she had come and sat down in front of the Barbie house and started to play.   Since I'm the one reading I never even heard what she said.  I love that Evan wanted to be sure I acknowledged her greeting.

We finished Bible and I called Jessie up on the couch with me for a proper "good morning".  She snuggled up in my lap, and these days she's quite a lapful (I was shocked when they weighed her a couple of weeks ago and she weighed 100 lbs!).  We chatted a minute and then there was a pause.  Then she says, "Squeeze the Charmin".  I've told her a plenty that she was "the Charmin", all soft and squeezable.  Some times when she walks by I'll tell her I need a squeeze.  This was the 1st time she'd told me to squeeze the charmin.

Sometimes these days feel complicated, trying to meet each kids needs and do it in a way that speaks in each of their "love languages".  I am sure that as the day goes on, things will get more complicated, and that even Jessie won't be satisfied with whatever time or attention that I can give her.  Even so, I'm glad that I am here with them.  I'm glad that we started the day reading the Bible together.  I'm glad that we have time to stop and squeeze the charmin.  It helps me hold on in those crazy moments, of which there are many!

"Where is my #2?" Our progress with number order :)

Yesterday, Jessie surprised me and cracked me up.

Jessie has a set of apples with the numbers 1-10 on them that I made as part of a Fall themed lapbook.  I included the apple/numbers in the lapbook as we were in need of a fresh way to approach the same thing we'd been working on what seemed forever, the correct order of the numbers to 10.  Usually, I get the laminated numbers out of the bag and put them in random order.  Then I let Jessie put them in correct order, talking her through it step by step.  I ask, "who comes first?" (cause everybody knows #1 always get to be the leader!) and "what number comes next", or " what number comes AFTER 4", etc.  This day I dumped them on the table and let her sort them out and put them in order.  She had her own system....all the numbers were upside down until she was ready to put them in their proper place.  She did it perfectly, with only one number out of place, with NO help from me.  No guidance at all.  I was so tickled.  I had known we were close to getting it, but didn't really think she would do it on her own.  Usually, she is easy to get frustrated if she doesn't immediately know the answer.  She has always had difficulty with the number 6.  Why she discriminates against number 6 I would love to know.  Often, when counting, she would leave out 6.  This day, she put 5 in the wrong place.  Rather than immediately correcting her, I suggested she count them to check herself.  When she said aloud 5 but 6 was there she immediately realized her mistake, found 5 by the 7 and corrected it.  After she put the numbers in order, she placed the number word directly beneath them, with no mistakes!!  The order number we have worked on for what literally seems like forever, but learning the number words hasn't been that difficult for her at all.  We've only been working on them a couple of months.  She knew most of them within a very few days.  Funny, the crazy mixture of strengths and weaknesses.

  

What cracked me up?  While Jessie was putting the numbers in order, she was looking for 2.  She knew 2 came after 1, but it was hiding in the pile.  She says, "Where is my #2?!!  I had it last weekend!" Jessie has no good concept of time.  She knows tomorrow is the next day when you wake up.  She has no idea when last weekend was, but she does understand that it is a section of time, possibly even understands that "last" weekend is a time in the past.  Probably one of my favorite things about the age range we are in right now, is the way she makes me laugh.  Sometimes she does it on purpose, as she has the same "Hall" (sassy and a bit sarcastic) sense of humor that we all do.  Other times, that crazy mixture of things she understands and things she doesn't gives us all a great laugh.