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.
at a pic of