How long is the grieving period?

I would be very interested to hear the thoughts of other mothers of children (or adults) with Down syndrome on this subject:  How long is the average time, in your experience and/or people you know, that a new mom grieves when she finds out her baby has Down syndrome?  There have been several things that have caused me to think about this.  A friend and I were discussing this today because of something we'd read. 

Last summer, our DS group was searching for a book to add to our bags given to new parents.  I read three books written by mothers of children with Down syndrome, hoping to find the one I would have wanted to read soon after the time Jessie was born. I've read other things since and now all the stories are mixed together in my head :)  While I can't remember the individual stories, I remember being struck by how long (for some) the grieving seemed to last.  Why does this matter to me?  Well, first, this kind of thing tends to roll around in my mind and be over-analyzed anyway.  Second, it affects how I might respond to new mothers in the future. And, it will help us decide what book to include in our new parent bags.

Two of my closest friends are mothers of children with Down syndrome.  For each of the three of us, the time of true grieving, feeling completely overwhelmed with -what-in the-world-am -I going-to-do-with-this-information, was short.  It was a painful, uncertain time, filled with rational and irrational fears, but the time it lasted was short. We continued (and still continue) to experience painful realizations that hurt for a moment, or a day, or a week, but never past that initial time would I describe feeling overwhelmed with grief or fear. 

I would be very interested in your recommendations of what books you've read that would be what you would want to read in that early period.  Currently, our new parent bags include:  Babies with Down Syndrome, a notebook of stories of our local families including pictures, a burp cloth printed with "I am wonderfully made" and another book.....it's the last book that we're uncertain of what it should be.  It's been a couple of different books in the past and we haven't settled on what it will be now.

Although I haven't posted here in forever, I hope I will hear from some of you :)

A Funny School Moment

Ah, this kid never ceases to entertain me :)   We were doing our school work.  A few days ago I had printed a list of Dolch sight words and I was going through the list seeing which words Jessie knew and which ones she still needed to learn.  This type of task, where she encounters many words she doesn't know, is always frustrating for her.  I usually don't keep pressing much once she gets to the frustration level. We had started with the pre-primer and worked up and covered much of the list in one day last week.  Today, I really wanted to finish the list so that I could make a list of the words we needed to learn.  Jessie was getting more and more aggravated when there were words she didn't know.  Finally she told me, "finish tomorrow."  There were only a few left, so I pressed on.  In just a second came, "I'm sick and tard of it!"  I laughed and hugged her.  I told her we were almost done. Then, when I pointed to the word "if", which I knew she knew, she said "sweating".  Sweating? Really?

 I was very pleased with how many words on the list Jessie knew. This was a list through 3rd grade. There were some words she's learned that she didn't remember and will just take a little review. But, there were many words I didn't think she'd know that she did.

I probably should have broken the list into more days so she wouldn't be as frustrated.  Because I have been completely wrapped up with working on scholarship applications with Jordan, Jessie has been slighted with her school, so I felt pressured to get more done this day.  She showed me, huh?

In every possible way, this kid keeps me on my toes :) 

Mooo-o-o-m, you aren't keesing (kissing) me!

A good bit of time and conversation have been spent recently trying to make decisions about Jordan's school year (college) next year.  My sweet girl has had to weigh a lot of things and has been feeling conflicted and emotional, trying so hard to make the BEST decision.  Jordan has been dual enrolled this year, her senior year. We spent several hours last week at the community college where she's been taking classes, talking to her dual enrollment advisor and several others, getting the information we needed to help her make decisions.   

In the end, after more emotion than Daddy's like to deal with, I thought Daddy had some good advice for his big girl.  She'd been finding out all she could about 2 particular career choices and was afraid that no matter how hard she tried, she might later look back and wish she'd gone the other direction.  Daddy said, "Jordan, if six months from now you decide PTA (physical therapy assistant) isn't the direction you want to go, and you want to be a rodeo clown, your mom and I will find a rodeo clown school and do our best to get you there."  Of course, his point wasn't about rodeo clown school, (is there such a thing ? :)  Daddy wanted his girl to know 2 things.  First, you do your homework, investigate the best you can, and make the best decision with the information and life experience you currently have.  Mama and Daddy are going to support you and help you.  Period :)  Second, you won't ALWAYS make the best decision the 1st time around, no matter how hard you try.  No matter how much homework you do.  Sometimes, you may look back and think you might have gone another direction.  It's impossible to never make a mistake.

All this time, attention, and emotion given to Jordan was a wee bit hard for Jessie.  It wasn't purposeful, but every time I turned around, Jordan and I were talking and Jessie was having to wait her turn.  She recently told a friend of mine, "I HATE waiting."  She does :)  This particular morning, I would talk to Jordan, kiss and play with Jessie, talk to Jordan . Jessie was patient  for a while.  This was, after all, day 3 of all this going on.  Her times of waiting seemed too long to her compared to the amount of time she was getting attention.  Finally, she blurted, "Mo-o-o-m  (then thinking a minute what she wanted to say, when I looked at her for an explanation), you aren't keesing (kissing) me!  We all needed the good laugh and kissing session that followed.   College and career decisions are important.  Kissing is important too :)

Christmas 2011

The fall of this past year was so incredibly busy. A real juggling act between home and outside commitments. Much of what was going on required mental effort. By the time Christmas break from homeschooling came around, I very much felt that I needed a break. Mostly a break from thinking :)

I love what CHRISTmas is really about. I love the family time and traditions that we have at Christmas. I hate when those special times are polluted with stress. This Christmas I was so very determined to avoid the feeling of stress that comes with so much we "have to do". I had to keep evaluating all through the season what I really wanted or needed to do and what just "felt" important or necessary. I wasn't sure what "simplifying" Christmas was going to look like, but I felt that it was necessary.

This year we never put up any lights outside. Not on the house, not in the bushes (we always at least do this:), none of the wreaths went up on the front windows or the front door, no lit garland around the front door. This year I just didn't do any of it. At first, it wasn't my intent not to do it at all, but when I kept not getting around to it, I finally just decided it was too late to be worth the trouble. I didn't put up many of the indoor decorations that I sometimes do. None of the Santa pictures from years past were drug out of hiding. I didn't do any real baking this year. No baked gifts for friends. Sometimes I genuinely enjoy the baking, but this year, I just didn't want to do the grocery shopping necessary for baking. So I skipped it all this year.

So what did I do with all that time I usually would have been doing other things? I spent LOTS of hours chillin' with my teenagers. Watching tv. Watching movies. Drinking coffee. Drinking hot chocolate. Making and enjoying frappes. Playing Wii with Jessie. Snuggling. We rented so many movies from Redbox while we've been on break from homeschooling! It has been such a deliciously relaxing time. I can't remember when I've spent this much time doing...nothing. This might not be the same way another family would choose to relax, but without spending any money(redbox is so cheap it doesn't count:), this was our escape, and it has been so wonderful.

I had not done any Christmas shopping till well after Thanksgiving, so I started to get a bit stressed with shopping, shopping, shopping, looking for certain elusive items for my kids. Each time that feeling started to sneak up on me I just refused to let it be.

I have done some long overdue organizational projects around the house, partly in anticipation of having a houseful of folks Christmas day. And partly, just because I always try to take advantage of school breaks to accomplish projects that there isn't time for when school's going on. But, it didn't seem so daunting since I'd had some down time to clear my head. In the months leading up to Christmas, there were times it literally hurt just to think...not do, just think about some things that needed to be done. I had taken to saying, "lalalalalala", when someone brought something up that I couldn't bear to think about. I'm not exaggerating the level of mental exhaustion that I felt. Overwhelmed. Putting off important things because my mind was just too full.

Simplifying Christmas this year was just what we needed. We had a great Christmas! I hope next year that I will add back some of the things I skipped out on this year. We'll see, but this year Christmas was exactly as it needed to be.

We DID put up the tree :) Years ago, my mother in law (who is with Jesus now) gave us some lights that play music, every year they are first to go on the tree. I sat in the recliner, the music from the lights playing while we decorated. All but Jessie enjoyed coffee while we decorated. As I pulled each ornament out of the box, I reminded the kids where nearly every ornament came from. Me, the person who can't remember yesterday :) I would hand the ornaments to the kids and they would put them on the tree. A sweet, special time. As I think about it now, I can remember and feel the sweetness of that time together. I am ever mindful, that with a 15 and 17 year old, the time I have left with them at home is precious.

I don't recall, before this year, having been to church on the actual Christmas Day. We had a very sweet,simple service on Christmas Day. The thoughts and feelings from the service stayed with us, hovering over the rest of the day. We had The Lord's Supper. It seemed so fitting on the day of celebrating His birth, to remember His sacrifice for us. How very much He loves us. I remember singing the words, "For He alone is worthy", my heart full of thankfulness and praise.

Since Christmas, we've still been playing wii and watching movies. Starting to try to get our minds around the idea that tomorrow we start back to school. Even though I'm not looking forward to going back to the usual schedule, I do feel refreshed in a way that I definitely don't usually after Christmas break. It's been so nice to just be still.

I'm hoping that I can find a way to modify my "if it causes stress, just skip it" philosophy to everyday life. With three kids, it is just so hard to discern the good (all the good things we participate in) from the best (not taking on so much that there is no peace in my cluttered mind).

As we TRY to get out of bed tomorrow at a reasonable hour, and start back to school, I'm hoping not to need the words, "lalalalalala" :)

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.

Always Learning :)

Jordan sleeps with her big sister, Jordan.  A couple of nights ago they were laying in bed together, talking before going to sleep.  While talking Jessie brought up that she had written on Jordan's t.v. earlier in the day.  When she had done it earlier, Jordan had scolded her and given her a pop on the bottom and Jessie was angry about getting in trouble.  She didn't seem to be repentant at all.  While talking in bed, she (Jessie) said she was sorry she wrote on Jordan's t.v.  Jordan said she thought another second and then told Jordan she would clean it up.  When Jordan told me about this the next morning, you can imagine that it made my mama heart very happy.

Two things:  #1, Jessie was obviously laying there thinking over her day, LIKE THE REST OF US DO when we lay in bed at night.  I've never known before if Jessie thinks back over things in that same way.  I know Jessie continues to talk about something fun we've done that she wants to do again, but this was clearly different.  When Jessie was younger it was so hard that often we didn't know for sure exactly what she was thinking.  I am amazed constantly at how her communication has improved.  Not only her ability to speak well enough to be understood,  but to be able to find the words to communicate what it is she wants to say.  It seems like she surprises me with something she says almost every day.

#2:  She realized she had done wrong, she was sorry, AND she wanted to make it right.  Wow!  There are certainly plenty of times when she is genuinely sorry for something she's done and she tries to clean up her mess, etc.  In the heat of the moment Jessie wasn't sorry, but after a "cooling off period" she could see more clearly.  There are many adults that could learn from her example :) 

The End of Summer :(

The summer has gone by way too fast. I don't know how it slipped away from me. There was a whole lot less floating in the pool than I had anticipated....and a whole lot more of driving my teenagers everywhere. Jordan babysat 3 days per week, so for the 1st time ever, she wasn't around every day. That was sad for both Jessie and me, Evan didn't really care unless he was asked to do an extra chore because she was gone :)

We are trying this week to get into something that resembles a routine, that definitely isn't one of my strengths. I'd rather be flexible and fly by the seat of my pants, but have realized, sadly, that doesn't work well for us. We found last year that Evan has a sleep disorder, so partly for that reason we are trying to get up at the same time everyday (not Jessie, we tiptoe around trying to keep that little monster asleep as long as possible:) I'm sure that no matter what modifications we make, we will never be as structured as many other homeschool families, but we are working on some improvements. I have always loved the flexibility of homeschooling and am not willing to give up more of it than is required for my sanity.

This summer, although we didn't work on any academics with Jessie, we made real progress in some other areas. If you are reading this and you DON'T have a child with Down syndrome, some of these milestones may not seem like much. If you DO have a child with Down syndrome, I'm sure you're cheering with me! With the school year pressures of having 3 homeschooling kids, it is hard to slow down enough to teach the skills that give Jessie more independence. I always feel desperate for her to learn those skills, yet find it difficult to slow down to work on many of them. This summer Jessie learned to buckle her own seatbelt. This was SUCH a relief! Up till now I'd been lifting or partially lifting Jessie to get her out of the car. We decided she was big enough that she didn't have to ride in a booster seat anymore. She weighs at least 85 pounds and is tall enough that the seatbelt rests in approximately the right place on her shoulder. I'd been having a little complication (mild uterine prolapse) that caused me to want to find ways to eliminate having to lift her. Once we got her out of the booster seat we were able to teach her to step down the side of the van holding my hand and the hand strap on the van. After a few weeks now of doing this, more often she is getting out entirely by herself, by sitting down on the floor first. As soon as she could buckle the seat belt we started working on shutting her door by herself. She can do this now, if she remembers to do it before she puts her seat belt on. This past spring we got new tennis shoes with velcro, now she can put on (most) socks and shoes by herself. These seemingly small steps of independence have been so exciting to me.

We haven't reached success level yet with the following skills, but are working on teeth brushing, hair washing/bathing, and picking up after herself around the house in various ways. As long as we buy the pump toothpaste she can fix her own tooth brush and has made real progress with brushing her bottom teeth, but we still have quite a way to go before she can do it alone. More often we are making her put away, some of her things, she drags out way too much for her to be able to do it alone, but we are trying to help her realize dragging out more = more clean up. One skill we are less thrilled about: she can now unchain the door. We've always counted on that extra measure of security keeping her in the house. Unlike some other kids I know with DS, Jessie doesn't like to be alone, so she has no real desire to go outside by herself. I worry though that she could open the door to someone when I'm in the shower or try to let the dogs out and get distracted. It is very helpful that most often there is someone else always home when I shower.

Well, if I am to keep to my appointed time to get up in the morning, I must go to bed :)  I was excited to share these new accomplishments with you, my blog friends, knowing you would understand and be excited with us.

Glasses specifically designed for people with Down Syndrome: Specs 4 Us

I had known for a while that Jessie had grown a lot since we'd last gotten new frames, and was soon going to need new glasses. Then, she broke a part on the nose piece that couldn't be repaired.  I'd been dreading this day.  We'd been wearing the same style flexible glasses for a LONG time and they had worked well for us. They had the temple that wrapped around the back of the ear;  Jessie was wearing the largest size they came in :(  The people at DenneyVision here have always been awesome to us.  They ALL (several ladies in the frame section and several men that do repairs and adjustments) know Jessie by name.  We've been getting glasses with them since Jessie was 7 months old and she's 8 1/2 now.  When she was really young, we had to FREQUENTLY have adjustments, that's when they really got to know us.

When we went in to look for new glasses this time, I asked them if they carried, or could order Specs 4 Us.  I'd heard about them on a Homeschooling and Down Syndrome yahoo group.  Specs 4  Us has frames that are specifically designed to fit the facial features that are typical of a person with Down syndrome.  I didn't feel comfortable ordering them without being able to see them on her, and the nearest place that sold them was a couple of hours away.  I didn't mind driving to the beach to check them out :), but I was worried about being able to get adjustments and repairs if I didn't purchase them locally.  The first person I asked at Denneyvision if they carried them or could order them said, "Nope, we don't have an account with them".

Jessie had decided that she wanted purple glasses....she would have been happy with pink also, but she knew she wanted glasses this time that were a cute color. This is the first time she's been old enough to express an opinion in the glasses shopping.  We tried on every pair of children's glasses that looked like something we would consider.  They all were not wide enough to fit her face.  We branched out to the teen and adult sections and looked around in the entire store (they have a ton of frames) and found 2 pair of "teen" glasses that were the closest possibilities. The two cute, purple pair of glasses seemed to fit the width of her face but the temples (arms/legs) were a couple of inches too long.  We were unsure whether the guys in the back could bend them into shape enough to work. Narrowing it down to those two took a long time so we had to leave and planned to come back the next day. 

This day when I came in, I had a different helper from the frame department.  When I mentioned that I wished they carried the Specs 4 Us, she immediately began researching whether they could order them or not.  She was willing and helpful but couldn't find out all she needed to know at that moment.  We left AGAIN, her distributor (?) was coming the next day and she was going to talk to them about whether they could order them.  She went to a couple of the doctors there, talking to them about our dilemma, she really went way out of her way trying to accomodate us.  She told me that we are not the only ones that have had a hard time, but that sometimes they order and have to send back and reorder (sometimes several times)  trying to find glasses that will work.  She said it would benefit them as well, to have some glasses that work for people with DS.  They have a pretty good amount of customers with DS so they found it worth their while to order some glasses rather than trying to make modifications to the ones they already have, and it not working perfectly.  She ordered 3 styles for us to check out and got them in just 2 days.  Today, Jessie is the proud owner of new, PURPLE glasses.   You can't tell anything about the color by this picture, but imagine they are purple :) You can see the actual glasses better by going to the link below.

They do fit differently.  The bridge across the nose is wider.  The temples are shorter, a good bit shorter, than the other ones we tried on.  They were able to warm them and mold them to still come behind her ear a little bit so they would "hold on" a little better.  It is hard getting used to her new look.  Her other glasses had gotten too small and I was used to looking at them.  These seem so much bigger. Although they are supposed to be fitted to not slide down on the nose, Jessie's are doing that, I am hoping this can be resolved with a little adjustment. After we've had them a bit, I will give an update to let everyone know how they are working out for us.

You can look at these glasses on line specs4us.com .  If, like me, you prefer to be able to get them locally, request that your eyeglasses place check them out. I'm not terribly assertive, and if Sally had not been so willing to help us, I would probably have ended up with other glasses that might not fit as well.  They have a great selection of colors that kids like.  They have sizes from toddler to adult.  Sally said that dealing with Specs 4 Us was very easy.  She said they were very helpful in determining which ones for her to order based on Jessie's measurements and style we were looking for AND didn't require that they set up an account that might have caused a delay.  Sally thanked me for bringing this to their attention, saying that otherwise they would never have known about them. 

I hope this info helps someone else that is having difficulty finding well fitting glasses for the person they love that has Down syndrome.

Spelling Puzzles

I found this Spelling puzzle at Ross for just $4.99. I was tempted to buy more, but I have a habit of buying a bunch of stuff that I sometimes don't end up using, so I restrained myself.  Jessie is not terribly good with puzzles, although it's something that we started doing on a very simple level with her (knob puzzles first) when she was very young.  Today was the first time we used the Spelling puzzles, she saw it in the cabinet and asked for it.  This set contains 20 puzzles with only 3 and 4 letter words.  I liked that only one letter was on each piece, and because puzzles aren't her strength, the fewer pieces work for us. I know that since she will do several (10 today) words in a sitting she won't remember the spelling after one or two times, but her visual memory is so good that this is a lower effort/fun way for her to learn how to spell some new words.  Yay! I love when we find a new way to approach things we are already working on. I wouldn't necessarily have chosen every one of these words as her first spelling words, but, I think it will make spelling these words more fun for her.  There were a couple of other choices of spelling puzzles available.  Truly, I can't remember what made me choose this one over the others, they may not have all been 1 letter per puzzle piece.

I know, all this time without a new post from me and today, two in one day!  Things have been crazy busy around here.  Crazy busy....older kids play rehearsals, finishing coop, Miracle League games, dance, gymnastics. Jessie had her dance recital (which deserves its own post), so dance is done...coop is done....there is light at the end of the tunnel...summer is coming....floating in the pool...slower schedule....floating in the pool (!)...I am eagerly looking forward to the more relaxed pace of summer. 

Jessie read a blend!! Our phonics experience thus far...

I was completely taken by surprise. She just did it. I didn't at all expect it. We were working in our Bob Jones Phonics workbook*. I bought this workbook as recommended to go along with the adapted Kindergarten Bob Jones curriculum. We had used the adapted K-4 successfully, so I had started the beginning of the school year with the adapted K-5. We didn't stick with it very long as she just wasn't ready for the reading with phonics.  She loved the colorful readers and the first few she really enjoyed, until we reached the part where she was expected to begin reading "word families". For example, taking the word it, that she can already read, then adding a letter to the beginning to read hit and sit. She has known all of her letter sounds since she was 3. She just hasn't been ready to progress to blending the sounds together. She seemed to understand the concept, but it required something of her that she just wasn't ready to give.  Even with sight reading, which she does very well, sometimes she is easily frustrated and just doesn't want to give it that much mental effort. Although I discontinued, temporarily at least, the rest of the curriculum, I continued to use (sporadically) the phonics workbook just to "keep" what we already learned and modified it if it required something she wasn't ready for. We don't work out of this workbook every day that we have school, so she hasn't gotten bored with it and we haven't progressed in the book beyond her current skill level. Other than letter sounds, the other benefit to this workbook has been vocabulary. There are pictures on the pages where we identify the beginning letter. She knows most of the pictures, but some are more detailed than she might identify them. A cactus she might call a plant, a wig she'd never had reason to know (!) and well (water well) same thing. You get the idea.

Today, we were using the phonics page to review the letter sounds and determine which pictures began with an H. At the end of this assignment the words it, hit, and sit were in a box at the bottom. I knew she could read the word " it".  I pointed and asked her what the word was. She responded appropriately. So, I asked, "Do you know the next word?"  I didn't expect her to say it. She looked at it. She said, "h....hit."  I got SO crazy excited that my son in another room thought something was wrong or someone was hurt!  I was shouting, "Hallelujah!" and we were giving double high fives and going nuts. Just to see, I said, "Can you read the next one?" Again, she just did it, "s....sit". Hallelujah! I feel we have turned a corner that I've longed to look around for a long time.

*Phonics Practice for K-5. This workbook can be purchased separately, directly from Bob Jones University Press.

Children with Down syndrome are so loving....??

When we meet new people and they say things like how loving all people with Down syndrome are, it seems a stereotype that isn't at all how I see Jessie.  She is very loving but those would not be the first words that come to mind in describing her.  I wonder, "Have YOU met my Jessie?"  She is such a spunky, stubborn (she fits that stereotype!), fun, funny, girl with her own personality.  Jessie has such a *"Hall" sense of humor. One of the things I've always loved about my husband is his ability to make me laugh.  He is truly a funny guy. Sometimes goofy, but mostly funny.  After all these years, his sense of humor has rubbed off on me....and then the kids.  We don't play truly mean pranks, but we love to play jokes on one another.  Our humor often is sarcastic but without meanness.  We love to be silly and take each other off guard by doing something unexpected....just for fun.  I think it's a sign of her intelligence that Jessie, too, is funny this way without copying exact things that we've done in the past.  She comes up with her own humor that mimics our style.  If I had to use just one word to describe Jessie, I think it would be fun. Of course, everything about her isn't fun, but if only allowed one word, fun would have to be it.

 I've started trying to write down some of the funny things Jessie says and does. Here are a few of Jessie's most recent times of entertaining us:

I KNOW that Jessie greatly prefers fried chicken, not baked chicken. I had already told her that our supper was going to be baked chicken, not fried. It had been a while since I had made baked chicken so I wasn't really sure if she would remember what the difference was. 

Me:  Do you want some chicken?
Jessie: Yeah!
Me:  It's baked chicken.
Jessie: uugggghh, gross. Disgust dripping from her voice.
I do not know where she picked up this phrase to use so appropriately, but she's been using it a fair amount lately when I'm serving anything that isn't fried or contains vegetables or fruit.  Maybe this one was a "you had to be there" for it to be funny. 

Jessie has a fascination with money.  She doesn't understand the concept of "how much" where money is concerned, but she does know that dollars are better than change.  She will take change when it is all she can get, but she prefers "dollars". She has been known to take money from our wallets, Jordan's bedside table, etc.  She is a very cheerful giver at church with OUR STOLEN MONEY.  One Sunday, her Sunday School teacher was commenting on all the change Jessie had brought with her....I had known nothing about it.  We later decided the money had come from Jordan's nightstand.  She also loves to "pay".  She wants us to give her "dollars" so that she can pay with her own money from her wallet when she wants a snack/drink at gymnastics or a "shwushwee" (slushee) at Target. There are many funny, and many not so funny, discussions about money at our house.

Jessie:  Hey Mommy. Smiling so sweetly.
Jessie:  I love you. I know she wants something....
Jessie:   Give me a dollar.   I'm a sweetheart.......She really meant, "I'm your sweetheart" or "I'll be your sweetheart". She clearly understands that money is desirable and her affection is a tool for negotiation!

Jessie sleeps with her older sister, Jordan, in Jordan's room. Usually Jordan sleeps nearest the door and Jessie sleeps on the side next to the wall. Recently, Jessie usually lays on the couch to go to sleep, then later wakes up and goes to Jordan's bed during the night.  Some of the time Jordan has started just moving over and Jessie climbs up on the outside edge. One night that they laid down to go to bed together rather than her falling asleep on the couch Jessie started this conversation:

Jessie:  Please, Jordan, can we switch sides tonight?
Jordan:  No, I wanna read so I need this side (by the lamp).
Jessie:  Come on, you.....me...together....best friends. She smiles, angelicly, irresistably (Jordan's words:)
Jordan:  No, sorry Jessie, maybe another night. Jordan moves Jessie over.
Jessie:  Then you pay me my dollar!!
Jordan thought this was all so cute and wanted to be sure to be able to tell it to me so she rolled over and typed this into Notepad on her phone.

Jessie has gone through a phase of calling Evan "boy".  This is NOT just that she knows he is a boy.  She meant it to be funny.  For several days, every time she referred to Evan she would just say boy.  We were in the restroom at coop. 

Jessie:  Where's Jordan?
Me:  She's in her class.
Jessie:  Boy?
Me:  Evan's in his class too.  We don't know how or why this started but it was downright hilarious.  Then, as suddlenly as it began, it was over.  Moved on to something new.

Hope my funny girl has made you smile :)


*For those of you that know us online and not in person, our last name is Hall.

Learning With Stickers

 I apologize that I don't know how to rotate the picture! We have had this sticker book for quite a while, but was reminded to try it again when my friend Heather recently showed me hers.  The last time we'd used it Jessie was more quickly frustrated with it.  She has really been enjoying it again this time around. We bought this sticker book at Sam's Club.

Typically, in a sitting, we will do a 2 page spread (sounds like we're talking about scrapbooking, doesn't it?). This day all the pictures were things you would either find in a tool shed or at school.  The part that gets a bit tricky is that not all the pictures that belong on one page are found on the same page of stickers.  I find the stickers we'll need for the day and only give her those so the task doesn't seem too difficult.  Some of the other categories of pages are :  Our Bodies, Things we do, Clothes we wear, In the home, Toys and games, Food, Fruits and vegetables, Town and city, Things that go, Farm babies, Pets, Birds,Wild Animals, Little Critters, Sea Animals, At the beach, Time, Sticker Alphabet, Counting Stickers, Opposites, Shapes, Colors. 

Jessie has enjoyed this activity.  It has given us some variety in our school day.  This has been an excellent fine motor exercise, she still has a hard time lining the stickers up perfectly on their outline.  It has also been very helpful for categorizing.  I don't think she "gets" that in just reading books, but this way she "sees" what goes together.  It has been excellent for vocabulary as well. Many of the pictures aren't things we would normally talk about.  Although she won't remember all of them, it has given her exposure to new things that aren't in our day otherwise. 

Jessie is always happy these days to pose for a picture for my "bwog".  When I take pictures of her school work she knows that's where it's going. As a record of what we've been working on I write the date at the top of the page.

Really Proud of My Kids

The first part of this week we've taken a light week of school, so that we could volunteer at a local ministry.  It is Spring Break for the city schools, and this ministry, Mama Tina's, was doing a feeding program and play time with the kids in their neighborhood.  I had never been to Mama Tina's before and Jordan had learned about what they were planning for this week when she volunteered the week before with  FLOW (a volunteer program with our homeschool group). 

Jordan has been to Mama Tina's three times.  Each time she went, the founder would tell the teens about the programs they have for the people they serve there.  Jordan has been coming home and telling me about it each time.  This place tugged at her heart, and she felt God might be trying to tell her something.  She's just 15, but for at least a couple of years she has truly cried out to God (and cried at times) wanting to hear a word from Him.  She has heard from a couple of her friends that they feel called to be missionaries at some point, and even felt called to specific countries. Jordan has felt envious of their certainty about what God said to them.  Truly, and this isn't mama bragging, I don't know any young person who seeks the heart of God more sincerely than she does.  I have hurt for her at times, as she has so desperately wanted to know that God was speaking to HER.  After visiting Mama Tina's those 3 times (and she's been volunteering at other very different places as well) she wanted us as a family to volunteer and find a way to be involved at Mama Tina's.  She felt drawn to Mama Tina's in a different way than the other places.  She said she felt God  might be telling her something........Woohoo!

The ministry of Mama Tina's is very varied.  They have a soup kitchen, a clothes closet, they offer GED classes and childcare for those parents taking the classes, they partner with another ministry to help children who have an incarcerated parent. They have addiction recovery programs.  They were sure to point out that they wanted to help those willing to help themselves, that wanted something better for their life, not enabling addicted persons to keep doing what it is they do.

 Listening to the founder talk about the programs they offer, and the people they serve, it struck Jordan what a really good life she's had.  Things aren't perfect for her as they aren't for anyone, but she's had no major drama in her life.  She's never been hungry.  Her parents have never divorced.  We don't have any addiction problems (in our immediate household).  We've always taken her to church, and more importantly, at home, we've always taught her about the Lord.  Our home life isn't perfect. She's been yelled at (by me), unfortunately, she's heard her parent's argue. Even so, she's had a very stable, secure life. She knows with no doubts how very loved and truly cherished she is by both her parents. She knows, yelling at each other or not, we are committed to each other and our family for the long haul.  Don't misunderstand: She knows ABOUT a lot of painful or  negative life experiences, they just thankfully, haven't happened to her.  She knows about my upbringing which was nothing like hers.  She has recently been made aware how blessed she is to have had a good life, specifically a good family life.  Jordan and I talk all the time, about everything. I love that we have become friends as well as mother and daughter in her teenage years.   So, while I have been thinking about and praying for orphans....she has felt burdened for them as well.  Having started out thinking about children who have no family, she is now thinking about children who haven't had a family life like hers...stable, loving, knowing she can count on her parent's always being there for her.  No matter what. 

We showed up at Mama Tina's Monday, not too sure what to expect.  Monday and Tuesday, we helped prepare and serve food and played and talked with the children that came.  We had to take turns a bit keeping up with Jessie, but most of the time she was happy to just be around the other children there.  I was so proud of the way my children served and behaved. Although it was initially Jordan that caused us to be there, Evan served with the same love that Jordan did. Tuesday, when Evan offered to help with the grilling hamburgers he was quickly put in charge of that and cooked burgers for about three hours. Never once, did they say they were tired of being there, tired of working or wanted to go home.  I know that some people serve to make themselves look good, or serve because they've been taught that it's a good thing to do.  My children seem to really get that in order to serve Him, you have to serve others.  I think they really understand that before people will be interested in hearing about Jesus, sometimes you have to minister to physical and emotional needs, they need to see Jesus before they know they want and need Him. 

I am very proud of my kids.  Not a puffed up kind of proud.  But a humble, thankful, tearful, thankful, tearful, thankful proud that the years we've invested in teaching them about the Lord....they seem to have heard some of it. That isn't a typo, I realize I repeated myself.

I don't know in what ways we will be involved in Mama Tina's but I feel we will continue to be. There are a few people there that already have a piece of our hearts.  I don't know exactly what God is saying to Jordan.  But I am thankful that she has a relationship with Him, that she has sought Him, and that He IS showing himself to her.  He is faithful and true.