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 :)

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.

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.

Sweet Big Brother

Evan has always been a sweet big brother, the sweetest, but watching some of the ways he has played along with Jessie's pretending this week has been the sweetest thing ever.  This big maturing boy, who will be 14 in two months, who looks more like a man every day, has pretended to visit different hotels (going from one bedroom to another was going to different hotels), helped dress baby dolls, pretended Jessie had a baby (you just go to the hospital or hotel to get one!) pretended Jessie adopted a baby (she obviously has overheard much conversation about adoption lately!), um, had to tend to the baby doll on baby potty after Jessie gave her a bottle,  he routinely has to be Jessie's dance partner. Now, don't get some crazy impression that Evan LIKES to do these things, but he knows that it means a lot to Jessie and makes her happy. I left the three kids home together while I was gone several hours last week for a board meeting for our FRIENDS group.  I had hoped that Jordan and Evan would spend some time playing with Jessie AND spend some time getting their homeschool work done.  When I got home and asked about their school work, they had spent much of their time snuggling, tickling and playing with Jessie. How can I complain about that?

I asked Evan to write as a writing assignment the other day a letter for our new parent packet that includes stories from siblings who have a brother or sister with Down syndrome. This paper surely needs some editing, some perfecting (he's ALWAYS hated to write, period) but the heart he expresses toward his baby sister is pure and sweet and loving.  I am so proud of the young man he is becoming.  Below are his words:

Well my mother asked me to write about how my life is impacted by my little sister having down syndrome.  To me, having Jessie (my sister with down syndrome) as a sister is one of the greatest things that could have happened in my life, and I truly believe that.  Having Jessie as a sister has really made me have to grow up a bit faster, most brothers and sisters don't have to worry about an eight year old getting out of the house and accidentally hurting themselves.  I think that it is good for me that I've had to take the more responsibility that I have, it has matured me a considerable amount.  I would say that having a sibling with down syndrome is a good thing, they are smart, funny, entertaining, and most of all extremely lovable.  For all the teenagers out there that think that having a sibling with down syndrome will not leave you enough time for your social life you're wrong, having a sibling with down syndrome just means that you will have to spend a little more time worrying about the needs of them instead of yourself.  If I could change Jessie from being special to a normal kid, I wouldn't do it for the world I love Jessie just the way she is, to me Jessie is awesome.  To several people I know Jessie is awesome to them and they see nothing wrong with her.

This was a first draft that has corrections that need to be made, but is an accurate picture of the way he feels about her.  When he says others don't have to worry about a sister getting out and hurting themselves...we have a pool in the back and Jessie a couple of times has stepped out the front door without us realizing it (she wasn't going anywhere but was in the front yard) so we are nuts about keeping the doors chained or listening for the door.  When he describes her as lovable, I think he truly means lovable...not loving as you hear others describe people with DS.  Calling her special....he hears us use the words special needs...he considers her special as an individual but isn't referring to her as special in the ways some use it (I don't think).  "To several people I know Jessie is awesome to them and they see nothing wrong with her." Funny to me, the words of a 13 year old boy...nothing wrong with her? The heart of this 13 year old boy by his words and actions every day is this....I wouldn't change Jessie if I could..I love Jessie just the way she is, to me Jessie is awesome. I wouldn't change Evan if I could either...I love him just the way he is, to me he is awesome.

Jessie and Gracey, a sweet friendship

Jessie has a friend from church, Gracey, that she dearly, dearly loves and nothing in the world makes a day better for Jessie, than to get to play with her.  They really only started to play together during the summer and since school started they haven't been able to play but a couple of times.  Yesterday, Gracey and her twin brother Grady were here with us all day while their mom was at work.  They are both very sweet children that you enjoy having around. Grady entertained himself with cars and our old Super Nintendo Donkey Kong (we still love that old game!).  Jessie and Gracey played Barbies; often Ken was in the "hopsital" and one of the Barbies were taking care of him. They played Dr., Jessie was upset that I wouldn't let her have the oral thermometer, that she had to play with the one that came with her Dr. set that goes in your ear.  She doesn't like to "pretend" anything that isn't just like the real.  They strung bead bracelets and made art with glitter and glue (that was a mess!) and they really had fun with that. They danced and twirled and took turns twirling each other.  For 7 hours, Jessie was absolutely in heaven.

Jessie is 8, Gracey is 7.  Gracey can understand much but not all of what Jessie says, but like us, she has learned to keep going on with the game if she doesn't understand every word.  She truly loves Jessie.  I know that for several more days (and they are out of town now for several days) many times a day Jessie is going to request Gracey's presence.  "Gracey come to my house and play?", "I go to Gracey's house and play?" and be aggravated each time she is told that Gracey is on a trip. Lately, every paper Jessie writes or colors on usually has Gracey's name somewhere on it.  She has learned to spell Gracey's name.  Gracey draws Jessie pictures and writes sweet messages on them, that she loves her and that she's her best friend. 

Jessie is such a social little girl and wants to go somewhere and be with people every day.  She hasn't had a lot of true friendships.  When she was younger I went through a terrible time; she would be friendly with other children, and they didn't want to play with her.  As Jessie has gotten more verbal that has gotten much better. 

I know that Gracey is going to outgrow the things that Jessie will continue to enjoy for longer.  In some ways it is even hard for me to enjoy, for worrying it will end tomorrow.  For today, I am very thankful for this special friendship.  It means so much to Jessie and to me.

Choosing to Homeschool Jessie

When Jessie was very young (still an infant!)I began worrying (that's just me!) about whether I should homeschool her, like I already was with my other two, or if she would be better off in school with the benefit of someone trained in special education. By the time she was a preschooler I felt pretty sure we would homeschool, but not sure about at which point. She did attend preschool at the local public school for two school years with her best friend, Joshua. You'll be hearing lots about him all along. She attended three mornings a week and was home by lunch. The first year her class was very small, with only special needs kids. The second year, the class was 1/2 special needs, 1/2 typical (if there is such a thing) kids. It was a pretty good experience for us, and I don't regret doing it, but there were things that helped convince me that homeschooling was going to be our route. Deciding to homeschool her kindergarten year, when her buddy, Joshua, continued at school was really hard for me. I agonized over the decision for months, weighing every pro and con, and cried quite a bit, and prayed A LOT. It was terrible trying to make the decision.

Heather (Joshua's mom) and I had become friends partway through our pregnancy when neither of us knew our babies would have Down syndrome. We were already becoming good friends and when they were born just 3 weeks apart, both having Down syndrome, we became the very best of friends. Our families spent a lot of time together. It has been so wonderful to always have a friend, who really understands almost without words, to go through things together with, the good and the bad. When she was leaning toward school and I was leaning toward homeschooling we both felt swayed by what the other one was feeling. It was extremely difficult for us to each make the choice about schooling that was right for each of our families. In those first months of Joshua going to school and Jessie homeschooling, it continued to be difficult comparing everything the other was doing. There were things about school that Jessie enjoyed and she would say sometimes that she wanted to go to school, that was ROUGH, but truly, she just can't evaluate all the variables. The grass always seems greener on the other side.... Eventually, we each settled in, happy with the choices we'd made.

I homeschool Jessie mostly for the same reasons I homeschool our other kids. I am able to target her teaching to exactly where she is. We don't spend time, except for more occasional review, on things she already knows. Nor am I teaching above her level of ability, things that don't have any meaning for her. Jessie is a good sight reader (not as good as others I've read about!), but she's got a very good visual memory. Second year of preschool she could read all her classmates names and wouldn't wait for them to answer when the teacher held up their names. I am able to teach to this strength at home and am constantly searching for new ways to teach Jessie things. While I know some special education teachers do an excellent job, it is hard for them to know and teach to the different strengths and weaknesses of each child in the class. I don't know much about all other disabilities...but I eat, sleep, read, live Down syndrome. No matter how much a teacher might have her best interests at heart, all of our teaching is one on one with only Jessie's learning style to consider.

Also, I realize I have control issues where my kids are concerned, but I think that is a good thing. I like knowing all of the things that influence them and choosing which influences are acceptable and allowed. As they mature, they have more freedoms and are exposed to more and make more choices on their own. Right this moment that applies more to the older two than Jessie, but is true for her too. I haven't said anything at this point about spiritual reasons why we homeschool only because at this point they apply more to Jordan and Evan than to Jessie. They each have Bible teaching on their level as a part of their school day, as well as "teachable moments" that happen nearly every day!

With all 3 kids, we have so many wonderful memories of hours spent reading together, cuddled on the couch, or propped up on pillows reading in my bed. Teaching them each to read....truly priceless. I will never forget the excitement or the phone calls to Daddy. When Jessie was just beginning with homeschooling her siblings would fight over who could call him and tell Dad what new thing she'd learned or done, now she calls him herself. She LOVES the phone.

There is plenty of time in the day for dancing in the kitchen together (she watches way too much "So You Think You Can Dance"!), she loves to "help" cook, and I really enjoy so much the more relaxed lifestyle of homeschooling. Although we are very busy, I think the homeschooling lifestyle allows for more family time and though hectic enough, is less stressful in many ways. For example: we never have homework...when we're done, we're done.

At one point, I considered letting Jessie go to school for the social reasons she wanted to go and supplement her teaching at home after school. After seeing how tired she was after 1/2 day of school during preschool, I really don't think I could get a lot of value out of her later in the day, after having gone to school. As hard as it was initially to make the decision, I have no doubts or reservations now that we are doing exactly what WE should be doing, what is right for OUR family.