Saturday, December 13, 2008

Frustrated

I have really been getting upset with myself and my attitude lately when it comes to Ella and Down syndrome.

Let me start by saying that I always debate whether or not to write a post like this. My mission in life is to show others, especially new parents or parents to be, that having a child with Down syndrome is wonderful. I don't ever want to scare a new parent by anything I write, having them think "wow, it's been over two years and she is still having difficulties accepting that her child has Down syndrome."


The truth is that I accept that Ella has Down syndrome, HOWEVER it seems every once in awhile to smack me in the face and break my heart all over again. I want to make it clear that I wouldn't change Ella for the world, but that doesn't mean that I am happy that she faces so many challenges, and I still get upset about the little things.


So, with all that said on with the point of this post. For the past several months Ella will just randomly say something, a word or two, in perfect context and clear as a bell. This morning for example I was feeding her oatmeal for breakfast, Ella signed and said "up." I said "what?" (because she was not done eating and she isn't one to not finish her meal,) Ella signed and said "UP." I skeptically asked her if she was done to which she replied, including signing, "all done." Um, okay. When I say that she says things clearly, I am not exaggerating it is as though it came out of my 4 year olds mouth just in a quieter girlie voice. Like I said, she has been doing this for several months, almost always accompanied with the appropriate sign, there is no doubt what she is saying. She told Chris to "STOP IT!" the other day when he was tickling her, she has said "flowers" while looking at my mom's centerpiece, she has said "sock", "baby", "fork", "sleep", "cat" and those are just the ones I can think of.

That's great you say? Yes, it is. However Ella will not repeat these words, not when asked, and not randomly again. It is as though once she has said a word it can never be repeated. I try showing her the things that she was doing when she said them in the first place, nothing. I just don't understand. I know that she has the ability to speak, I know that she understands (her receptive language is awesome) but somehow somewhere between the brain and the mouth it gets lost. My mom gets so excited when she hears Ella say something and I try to smile and pretend to be excited but I'm not, because I know that she won't do it again and it breaks my heart. Ella does have a few words that she uses on a regular basis she says, mama, dada, bubba, no, hi, and help (which comes out belp,) but for a 2 year old that is not much. I am so used to Hunter who spoke very early and has not been quiet since (and anyone who knows Hunter knows what I am talking about.)

Communication has always been my biggest focus for Ella. She does so well in the physical stuff and by that I just mean that it comes way more naturally to her than the speech. I have met many adults and teens with Down syndrome that I can not understand, and they are so social and just talking up a storm with you, and yet I have no idea what they are saying. That makes me sad. I want Ella to be heard and understood. She definitely gets her point across now, or at least our family understands her, but I want everyone to know what she is saying. People judge others by the way they talk, I don't want people to treat her like a child her whole life, or to think that she is stupid and avoid contact with her. Now, I don't think that the adults that I encounter with Ds that aren't able to speak clearly are stupid or anything, but I am the parent of a child with Ds and so I'm sure that I am more open-minded and understand just how difficult it is, but will the average person in public be as understanding, I don't think so.

So, with this on my mind we attended a Christmas party that the ARC put on last night. The kids had fun, and we got to do some visiting. There weren't many there as we had a bit of a snow storm last night, but I dragged my friend Mary along with her two boys. Anyhow, after that the kids and I stopped by Target to pick up one more pack of Christmas cards. As I pulled into the card isle I immediately layed eyes on an adult woman with Down syndrome shopping with her mom. They were looking at Christmas ornaments and discussing which ones to get. This lady's speech was beautiful, I understood every word. They quickly walked off before I could talk to them. After we left the cards Hunter wanted to "just look" at the toys, so we were walking through them when we ran into the same two ladies. We were standing looking at games when the mom walked right up beside me. I couldn't miss an opportunity, so I asked her if her daughter had always spoke that well. She looked at me, then at Ella, then understood why I was asking. She said that it took a long time and a lot of work before she could speak like she does. Ella was babbling about something, and the lady said " at this age my daughter wasn't even trying to speak." So, I immediately felt better.

Then the daughter came over and asked me how old Ella was and what her name is and told me that she is cute. I asked her what her name is and her mother answered for her, "Pam." Well, Pam did not like that and said "MOM, I was going to answer her myself." Ahh, I loved it! Anyhow, Pam was telling me about how she rides the bus down to the ARC, just for lunch on Wednesdays, but other days she goes to bowling, and dances. Well, Pam wondered off to look at something else. Hunter this whole time had been looking at the games where we stood, trying to sound out the words. The mother asked me how old he is, I told her he is 4, she said wow he is really close to reading. I said yeah, he is trying really hard. She said that Pam can't read, she knows a few sight words but can't read say a book. Well, that just kind of deflated me. Here was this lady who spoke so wonderfully and had a normal conversation with me and yet she can't read? I personally LOVE to read as does my mom and we share books with each other and go to the bookstore together etc. Is this yet another thing that I will not be able to share with my own daughter?

I have also always been very sad when I think of not being a grandmother to my daughter's children. My mom is so close to my kids, just as I could always picture myself being to my daughter to be's kids. Just a few weeks before Ella was born I was up in Alaska and my mom and I were making a quilt for Ella, and I could in that moment picture myself doing the same with my daughter in the future. When Ella was born and we found out that she had Down syndrome, that was one of the first things I thought about, not ever having that opportunity. Ella is obsessed with baby dolls, carrying one around on her hip all the time, she is very caring, feeding them, kissing, rubbing their little heads, rocking them, and then laying them in the doll crib covering them with a little blanket, redoing it over and over again until the blanket is just perfect. At school on Friday Ella was playing with a baby doll and one of her therapists said "oh are you the mommy?" signing mom. I remember as a kid I was not at all girly, but I loved playing baby dolls, always imagining of having my own babies one day. What if Ella has that same dream? How do you explain to someone that while they are physically capable of having children they are not mentally or socially capable, that if she were to have a child it would have a 50% chance of having Down syndrome and what challenges that brings and yet make it not sound horrible because Ella herself has Ds?

Ugh. See, these are the things that run through my mind when I try to sleep at night. I get so frustrated because I feel like I shouldn't think these things, I should just be thankful for how healthy Ella is and how well she is doing, and I am, but my worries never lessen. My therapist says that I SHOULD or SHOULDN'T feel one way or the other, I feel what I feel and I can't help it. But still I feel guilty.

So after that incredibly long, surely confusing post I will leave you some pictures from the party at the ARC last night.

Ella and Riley eating cookies!

















The big
brothers!









Riley is a
tough guy



































































Best attempt
at a pic of
the 2
of them.








The 4,
they look
like they
are being
tortured.

20 comments:

Shannon said...
This comment has been removed by a blog administrator.
Tricia said...

First of all, this was not confusing to me at all. Not at all. I have the same concerns and frustrations. Georgia too has the same occasionally saying words but not repeating them thing (fewer words than you mentioned, but DEFINITE words and CLEAR). And I think about the fact that Georgia cannot have children ALL the time. It breaks my heart. It seriously breaks my heart. I feel like there is something about a mother/daughter connection when the daughter has kids and while our sons may one day have kids, it feels like it will be different.

I don't have all that much to say, other than I understand so completely.

Tsquared417 said...

Let me say...I've been there. I'll be doing so good and then BAM I see a Mom and daughter shopping for a prom dress, etc., and I want to scream---why don't I get to do that???? I think it's great that you are being honest...even though we try to provide hope and "light" to new moms, etc, it's also important that they see there are bad days...that way when they have a bad day, they'll feel normal instead of feeling like a failure. We are doing the best we can, our girls are wonderful and there're bound to be bad days. Hang in there! :)

Bethany said...

So yeah, I pretty much could have written this post. Question: does Ella have non-disjunction? Did you know that kids with mosaicism typically speak late, but when they DO speak ... it is clear as day. I really wonder how many of our kids would end up being mosaic if we only tested beyond that 2nd cell line. Testing two cells is NOT enough.

Anyway, Payton too says some stuff SO clear and then I'll never hear it again. Same thing you said. I guess we can only hope that more of it will be here someday soon. But yes, it can get depressing!

Melissa said...

Thank you so much for posting this! I truly appreciate your honesty! I have the similar concerns as you, but only different since I have a son w/DS. I have many moments when I am saddened of the thought that I may never have grandchildren from Dillon, it can be very heart breaking sometimes...but I just do my best to accept it. You are being REAL & seriously, Expectant parents need to have an idea as to how we all feel...it's an amazing journey to have a child w/Ds....we go through our ups & downs...As any parent would with any child!
I'm really grateful for the blog world because of posts such as yours honestly help me get through "tough days". It reminds me that I'M NOT ALONE HERE;)
Who knows what modern medicine is going to bring 10yrs in the future...look back at how DS children were educated, I have great confidence that Ella may very well be able to share that love for reading with you...it just may be a little different.
It's completely ok to be frustrated sometimes...WE'RE HUMAN!!

The Hortons...one day at a time. said...

I think any mom with a child who has DS has similar feelings. One thing that my husband and I decided to do was not to think about the future! We make a daily effort to live for the momment, nothing more, nothing less. We also celebrate EVERY little (or huge to our child) accomplishment. Our son rolled over for the first time 2 weeks ago. He hasnt done it since, but we celebrated that momment! He smiles in his sleep, but not when he is awake. We cheer when we see him smiling. It is so easy to become overwhelmed when someone has a child with DS. We often find ourself saying to others " we will celebrate EACH success no matter how big or small and no matter what Malachi (our son) grows up to do (abilities) or be (job) he will be ther very best he can be." Hang in there, 10 years from now you will look back and see how much has changed and be thankful for the struggles you all had along the way!!

Jeannie said...

I so completely related with everything you've written. I struggle too about whether to post on negative days. About the reading, I'll share something with you that my best friend shared with me that cheered me up immensely. My bf's aunt works with children who have Ds, and she knows many, many who not only read but are voracious readers. My husband and I are both big readers, so we hope to pass that along to Kiki -- but you know, our two oldest kids don't really like to read at all (they do it when they have to for school, and that's about it.) So I think at some point it becomes a personal preference. :)

Rachel said...

Ella is such a precious and beautiful little girl. When you mentioned the issue of reading, I thought of something I recently read that I think would encourage you. I have been taking Children's Literature this semester. One of my textbooks, "The Read-Aloud Handbook" by Jim Trelease, chapter 2 (I have the 2006-2007 edition)mentions a little girl with Down Syndrome who ended up being an excellent reader because her parents spent much time reading to her. The key to raising children who read is to start reading to them at a young age. Trelease's book also has a list of excellent read-aloud books that you can enjoy with your children. I also read Honey for a Child's Heart by Gladys Hunt (4th edition). This gives some excellent book suggestions as well.

Yo Mamma Mamma! said...

Howdy,
Your little girl is adorable (I sent my mother your post on her heart surgery - it sounds exactly like what Violette might have someday - and she said she wanted to meet Ella's parents because she thinks she looks so much like my daughter!)

Anyway, I think we all have those "deep sigh" days when our minds start on things that are floating out there in the future instead of hovering right where we are right now. I remember with alot of clarity after Vi was born that I was reading a Stephen King novel, and broke down in the bathroom crying because she'd never read a book like that. Well, I snapped out of it and got to thinking. First, I really disliked that book. So much so that I decided to stop reading it then and there. Here I was mourning my daughters inability to read a book (20 years from now) that I disliked, lol. Then I realized that there are many people who never read (my husband) and don't enjoy it. The thought never crossed my mind to worry about my other two not loving to read and they might not, so why was I giving DS such a big place in Vi's future?

You are doing everything and being exactly the mother Ella needs.

Mary said...

OK Where to begin. First of all... NO GUILT! I know I have had and continue to have plenty of it but I am really trying not to feel guilty about things. And let me tell you that is hard with all this good old catholic guilt. I figure we feel what we feel and if we aren't inflicting pain on anyone then it has to be ok.

I seem to remember a time before Riley where I would wonder similar types of things about Rex. I get hung up on the not having a girl thing a lot. Rex will be my only source of grandkids... I sure hope his wife likes me. But no matter it will never be like the relationship I have with my own mom. That totally bums me out. I have been pleased with Riley's verbal progress but the other night when he had his 2 year well child check and the check list you have to complete about the skills they have acomplished are all based towards typical kids and then it says that typically two year olds have 200-300 words. YIKES That took the wind out of my sails. I have to believe that the kids will talk. I just can't let myself think otherwise...

So girlie don't feel bad about your worries just try not to let them make you too CRAZY. Or at least not any crazier than I am. :-)

I have plenty more on this subject but dont' want to hog your comment space. THen your readers really will think that moms of kiddos with Ds are a crazy crew.

Kristen said...

I truly adore your honesty and strength it took to write this post. I have wondered myself if I should voice my frustrations on my blog more than I do. After reading this post I realize how it helps me feel less guilty for having "downer" days.

*giggle* kind of funny how venting your guilt eases my guilt. :o)

And with that said, I just want to tell you that what you are feeling is not something you need to feel guilty about it. But I understand. There's days I'm going along fine and then BAM it slaps me in the face again. On those days I think about the "Welcome to Holland" story. Do you remember the part where it says " And the pain of that will never, ever, ever, ever go away..". I guess that comforts me. It tells me it's ok what I'm feeling. I have found that when I can affirm my feelings to myself it's always easier to move forward when I'm not beating myself up over what I feel.

Laurie said...

Kacey,
I don't know if I can say anything more that hasn't already been said. I understand completely where you are coming from. I accept Chase's dx, I love Chase without abandon...but there are definitely times that the Down syndrome truck hits me head on.

We do what we can do. I think we have to admit and be honest about our frustrations, or they can eat us up inside (and blogs are such a great way to do it!!). And I also believe that being honest like that is a help to other parents just starting their journeys because the feelings of helplessness or hopelessness are there, they are real, and everyone needs to know that they are not alone in them, nor are they something that completely take over your life forever. They are just there, and sometimes lurk closer to the surface. And that's ok.

{{hugs}}

rickismom said...

A delightfully honest post. And as for being:"an advocate for DS", if you are not honest, no one would believe you! That's why I never go to new parents with the "Oh gee, its great!" attitude. Instead I would rather be honest and say "Yes, there is pain, but you survive, and there is a lot of good stuff too!" (My daughter is age 14 years.)
As for them having kids, see my post:
http://beneaththewings.blogspot.com/2007/11/we-plan-and-they-plan.html

As for speech, give her time. If you keep working on speech, you have a good chance of sucess. And oh, yes, Ricki definately knows how to read (currently second grade level, but improving by leaps and bounds)

Becca said...

Oh, I SOOOOO hear you. I have those thoughts, too. And the one about being a grandparent to her children, well, Samantha is and will be an only child, so I will essentially never be a grandparent. But I accept that (now, anyway!). I never worried about the reading, but definitely about her being understood when she speaks. Samantha is quite verbal, but I think we're the only people who know what she's saying. I do see a huge improvement in her pronounciation since she's been in school and can see how the ST has been working with her. But you have to remember, our kids are only 2, and there's a long road ahead of them. So much progress to be had. They were born in a good time for services and therapies, and I have hope and faith that they'll continue to progress beautifully.
Man, Kacey, Ella's such a little doll!!!

Jennifer said...

I can't be like the others and say that I feel the same way. I don't have to bear what you do on a day to day basis. I CAN say that we have a Father that cares for us more than we could ever care for anyone! Cast all your cares on HIM for HE cares for YOU! If it matters to you, it matters to HIM. I love you!

Aunt Tami said...

I cannot say that I "get it" too like so many of the others that have posted, but I do understand the the feeling of frustration as any parent has their good days and bad (although I am not comparing my good and bad to anything that you have had to plow through)! I do admire you for being so REAL about your feelings. That is what is really hard to own your feelings and express them so genuinely! I just love the pics of the kiddos at the party and I am just amazed at the beautiful head of hair on little missy's head!!!! Absolutely gorgeous! That pic of Hunter with the other boy--WOW such a good looking boy! I see so much of Chris in him the older he gets! Give the kiddos kisses from us--love ya's--Aunt Tami and family

Michelle said...

I'm reading your post and could have written the same thing about Matthew. His speech is very delayed but he has signs and some words (more approximations, but still some words). Hubby and I can understand what he is saying but nobody else usually can. I swear I have heard him saying new words or new signs and then he never repeats them again. I try not to dwell too much (although I always do) and hope one day he will be talking our heads off.

Ella is adorable!

Sabrina said...

Thank you for putting into words exactly how I feel atleast weekly about my little Abbi. It makes me feel normal to know that others feel the same things that I do. I love my Abbi so much but I also get sad thinking that I may never have grandchildren if we don't have another "normal" chlid. I am so thankful she is healthy, but you can't help but mourn the loss of things others take for granted. I also want to communicate with Abbi and worry about her speech constantly. I just keep hoping that one day it will come!!

Nicki said...

I can definitely understand how frustrating it must be to wonder about Ella's future. It goes without saying that Ella is wonderful the way she is... but every parent worries about their child's future, and Ella will be facing more challenges than most children do. I think that all anyone can do for ANY child is hope that they'll be happy.
When I worked with kids with autism, a speaker at a conference once told me that quality of life is having the freedom to do the things you love to do. She meant that the best things we could do for the children we worked with would be to help them develop their interests and talents, and help them with the social skills necessary to use those interests and talents. The lady who you saw in the store who had Down Syndrome may not have known how to read, but it sounds like the quality of her life was wonderful. My sister's brother-in-law has Down Syndrome but certainly holds his own and is a loved and appreciated member his family and the community, works full time and will retire in about five years, and is in general a happy and successful guy.
It is impossible to know what lies ahead for Ella. But I think she'll definitely be happy, because she comes from a great family who will support her in everything she does!
Uh... sorry for the long comment!

Kiki said...

I am afraid it is all too normal-and ok-to feel these feelings! I have them too-sometimes more than others and when I start to get overwhelemed about the future and what it might or might not hold for Bree I think of this quote I have in my house that says "the great thing about the future is that it comes one day at a time" It helps me calm down a little and realize that it will all work out in the end if I just take it one step at a time
I am so glad we have this blogging community to share and see that our feelings are ok and others are going through the same thing!
Hugs!