Monday, December 28, 2009

Hurts and Hopes

It still hurts sometimes to see other babies close in age to Finn - younger even - and to see all the things they do that Finn doesn't do. I try to focus on Finn himself, and all the things he cando, but sometimes the comparisons are unavoidable. I wish I could say with honesty that I've made peace with it. It's a process. Maybe a lifelong one.

It hurts that my son is part of a class of people who are still vastly misunderstood, avoided, ridiculed, belittled, and looked down upon.

It hurts to know without being told that there are plenty of people who are glad it didn't happen to them.

It hurts, too, that still, people who know me openly worry and fret about their "typical" children's development. As if a delay in any area would be beyond their ability to accept and deal with. What does that say about how they really view Finn?


As 2009 winds down to its end, it's hard not to think about goals for the coming year. I've pretty much resolved to forego making official resolutions, although I certainly want to work on things that I know can better my life and that of my family. New year's resolutions have a way of eventually (sometimes very quickly into the new year!) leaving me feeling disappointed in myself for not meeting the lofty goals I was so motivated to set at the end of December. So I skip the resolutions these days.

That said, I still, of course, have hopes and visions for the coming year, maybe especially for Finn.

I hope Finn walks this coming year. It's a reasonable hope, I think. He'll turn two halfway through the year, and by year's end, he'll be two and a half. So walking is a reasonable hope. But I also know full well that it he may, in fact, not walk this coming year. So I'm trying not to pin my hopes too firmly on this, but I can almost see it in my mind's eye. Maybe he will.

I hope Finn speaks a couple of words this coming year. This hope leaves a hitch in my chest and a tightening in my throat. My baby is almost a year and a half old, and he doesn't yet say a darn word. I know this is not at all uncommon in children with Down syndrome. They are, after all, notorious for their speech delays. Finn babbles plenty, and has for ages, but he doesn't say a single understandable word. He doesn't even know any signs (which is really the fault of his family). Communication, of course, goes beyond spoken words. When he reaches up for me, when he grins at me, when he crawls over to his booster chair and tugs on the straps, when he wraps his arms around my neck and pushes his face into me - I know what he's saying. And when I sing to him and hug him and tickle him and smother him in kisses and tell him I love him, and he smiles his big smile at me - I believe he understands me. But still, I long to hear his voice forming words.

I hope over the coming year Finn leaves baby food behind. It's all he eats currently - that and breastmilk. He has definite texture aversions that we need to overcome. I'd like to feed him peanut butter and jelly sandwiches like his sibs eat.

I hope over the coming year I can find some balance with the amount of therapy Finn receives, and make peace with it. I'm not there yet. When he was receiving therapy every week, it began to feel suffocating. I didn't (and don't) want his babyhood to be overtaken by therapy. So we reduced services. And I've been second-guessing myself about it ever since. I want to trust myself as his mother, to believe that I know what's best for him, but it's hard when it seems like everyone else is making a different choice than I've made, and the experts all seem to think we need to be doing more for him. So I hope to get to a place with all this that feels right.


Mel said...

Hey Lisa

I know exactly how you feel trying not to compare with other people's kids. It is disheartening, and I don't know if I will ever 'get over' it. Although I don't know Finn, I'll bet some of that babble is words. If it sounds close, it is, as far as I'm concerned. And of course he understands you- receptive language is far earlier to develop that expressive, and I'll be Finn has lots of ways to get what he wants ;) I feel for you too on the therapy front, and wish you had something like what we attend, where we are NORMAL because all the other kids have DS. I look forward to it each week.

Luke loves music therapy. Your husband is musical- why not look into this. You can combine lots of things like standing up and moving in different ways, signing key words, and learning shapes, colours and different directions. This is fast becoming my fav. therapy for Luke, and you can hit so many birds with one stone in a fun way. Luke started to 'sing' last week.

As for the walking- who knows. I was certain that Luke would be walking by 2, but with 3 weeks to go, it doesn't look likely :(

I can send you the site where our music therapist sells her CDs if you like.

Catherine Just said...

I wish I lived closer to you. We think similarly and share similar feelings about this path we are on.
I appreciate your honesty so so much.
Thank you for this blog and your open words about everything you go through. I go through it all as well.

Nicole O'Dell said...


Just wanted to let you know I still check in on you and read your blog via feed. Sorry that I don't always get a minute to come comment.

Finn's AWESOME! I love him...and you for sharing him with us. :)

lisa said...

Lisa, I am also Lisa and I have a 6 year old son with DS. I took my son out of therapy at 2 years old and looking back wished I had not worried with all of therapy and what percentile he was in. I felt like my son belonged to everyone, but me. Everyone has looked down on me for my decisions with my son also. I have no regrets. My son did everything when he was ready, and not a minute sooner. He is doing great without any therapy and I am homeschooling him. We learn in his way. He can not be still, so we count while swinging, dicussing colors while taking walks down trails, write his name in the dirt, ride horses and 4 wheelers for balance. My son also loves music and attended a Kindermusic class for several years. We also have a 20 mo. daughter and loving the freedom of her baby days with no worry. thanks for sharing,
Lisa from TN

ashleypmo said...

Thanks for the post--it was very heartfelt.
Mason is 4 now, and I have to say I'm 99% over the comparison thing---so hang in there, it gets easier!

Mason didn't walk 'til he got his orthotics at 2 yrs---and he hasn't stopped since....

Mason was a notorious anti-signer. As in, "Oh, you'd like me to sign? Well, how about if I sit on both my hands and just smile at you for a while?" He had a few words at 3, and he has a couple hundred at this point. Of course, you can't carry on full (comprehensible) conversations with a couple hundred words, but his vocab is increasing exponentially by the week. (mixed blessing....)

Oh---I agree with Mel on music therapy---it was MIRACULOUS in terms of Mason's speech. He was about as interested in talking as he was in signing, and the day he had his first music therapy session, he was like "Okay, talking's cool!"

stephanie said...

It will all come in time. Emilia is not much younger than Finn(she's 15 months) and she still doesn't say a thing! She won't even turn her head in the direction of Daddy even though I am constantly saying "here's Daddy" to her. I have yet to here the words Mama and she is not signing anything and we are constantly signing with her. But she will and so will Finn. Just in his and her own time, not ours. That's the tough part.

Lisa B said...

I think all of your hopes are realistic and I hope they are realized in 2010 - you are certainly due to have a great year after the turmoils of this past year and a half :)

Don't beat yourself up about the therapy question - it may get kids places quicker or it may not and no one will know since there is no way to test out whether it works...Matty had his speech therapy and he began talking better within a month or so but maybe it was all coincidence and he would have talked then anyway - even his therapist said that :)

Finn is a wonderful, sweet, beautiful child and will get to his benchmarks when he does. Happy New Year to the family!! Lisa

Tinab said...

Lisa, I found your blog on the DS board at BBC. I found that group while we were looking into possible problems with our youngest son, born when I was 42. We chose not to do the amnio and he was born with normal chromosomes in June '09. I have continued to follow several blogs involving DS kids. I find their stories so inspiring. I think Finn is so cute and love reading about his progress. I wanted to comment on your feelings about Finn's speech delay. My 7 YO daughter is typical but basically didn't say a word before age 3 and when she finally started to talk, you could hardly understand a word she said. We eventually had her evaluated by speech therapy and they said she was appropriate for age. My 2 YO son is also typical but didn't start saying words until he was over two and just started putting sentances together at 28 months. Even typical kids aren't always normal, as you have commented before, and they all develope at their own pace. Finn will talk when he is ready and it will be a wonderful thing. I wish your family all the best in the coming year and look forward to following Finn's progress :)

Qadoshyah said...

My brother with DS is almost 5 years old. We *never* went to PT, OT or ST. We always did his therapy at home, from the time he was born. And he has done absolutely wonderful. He sat at 9 mths, pulled to stand at 13mths, walked at 17 mths and crawled in between there.

We do go to speech therapy once a month now. But, I still do his ST with him 3-5 days a week and he has done fantastic. If *we* weren't doing all that we do, he would not be where he is at. I think the biggest part of getting our kiddos to excel is on the families side of things.

Just some thoughts :)