Thursday, March 26, 2009

I don't know

Ugh. I am feeling pretty discouraged right now. I am basically resigned to the fact that I do not know how to help Dylan learn to sit. He is so resistant about it. I don't know if it's because of his reflux or if he just doesn't like to be in that position. Every time I try to bend his body into a sitting position, he becomes completely rigid. I can barely bend him. It appears that he is uncomfortable, so obviously I do not want to force the issue, it's just...ugh. It's just really frustrating at the moment. I already feel guilty about not working with him enough and now it's doubly frustrating because when I do try to work with him, we get nothing accomplished. I don't know what to do. Here's that "f" word again. The word that Lisa was talking about. One that I can relate to well...I feel like I am totally failing him.

I know, I know. I know what you are probably thinking: 'This is sitting we are talking about. It's not the end of the world. He will reach his milestones when he is ready.' I hear you and I feel that way as well, but...it's just...it's just one of those things that I feel like I should be able to help him with and I can't. It's a reminder of how much more difficult things will be for Dylan. And for me...because at times like these, I realize that I don't know what I'm doing. I don't know how to do this Down syndrome stuff. And it's breaking my heart.

Does anyone out there have any experience with such sitting woes? Any ideas on how I can best work wit Dylan on this?

As always, thank you.

18 comments:

Karly said...

{hugs} Laurie. I know how you are feeling. We didn't have sitting issues, but Kailey didn't crawl until she was 15 mos, despite rocking on her hands and knees for months and months. Everyone would say "hey, we don't know any adults who can't crawl..." But somehow that is less of a comfort when you know your kids will have some level of delay. Now we are having the same struggles with walking. She "can" walk and does so when she feels like it, but I can't motivate her to be a full time walker to save my life.

It's really frustrating and somehow a good learning experience for me to have to realize that as much as I can "help," she really is on her own time table and waiting to surprise us when she is ready.

Many {hugs} my friend.

Lis said...

I cannot help with the sitting, but I know I hate to sit in certain positions now that I have the reflux issues. Sorry mama. I love you!

Mara said...

One thing that helped Kayden sit is the child rite chair by Bumbo. Kayden didnt resist sitting so I am not sure if it will work with Dylan but you could check it out. Goodgle childrite- sorry I cant remember if it is a com or what at the end... It is really nice to see her being able to actually sit and it is good for her trunk muscles. Before we had to prop her in the corner of the sofa and this way she is a big girl and can look around. It is pricy but I figure we could always resell it to some one else with CP or similar issues. I heard aboutit from another blogger. GOOD LUCK !!

Sarah said...

I was going to suggest the Bumbo seat. My Dakota never sat on his own and the bumbo helped him a lot to be in the sitting position.

Shelli said...

Hello, first I enjoy reading your blog about Mr. Dylan. Our daughter did the same thing Dylan is doing and I was afraid it was hurting her tummy since she still has reflux issues. She didn't want to sit up and really fought us on it but let me just say in time she finally did. We also tried the Bumbo chair but she didn't like it either. Our PT brought us a little blow up pillow that she had gotten from IKEA and we used it in the high chair to help her sit up and that really seemed to help her.
I think all of us mothers at time feel like we are failing our children ones with special needs or not, I know I do. Just hang in there and take it day by day, that's all I know to do☺
Take care,
Shelli

blessingsandglory said...

Laurie -

Hugs to you. I can totally relate to some of your concerns. One of the first (and hardest) things I had to do was let go of any milestone expectations or timelines I had set for Charlie. It was wonderful to finally just let Charlie reach his milestones on his own time - when he was ready - not when his mom was.

That doesn't mean that we have ever stopped trying to work towards each milestone. We spend hours at therapy - our current goal is crawling. I know that Charlie is fully capable of doing it, but honestly it's totally up to him.

As for the reflux - Charlie had VERY bad reflux and I know (his therapists agreed) that his reflux significantly slowed down his progress - sitting, crawling, etc. He didn't have the energy (because he was always spitting up) and because it hurt. He too would turn rigid when we tried to put him in the sitting position.

The day after Charlie's first birthday (yes, I realize that this is WAY past the "timeline" for sitting) Charlie sat up for the first time. He sat up and didn't need any help from that day on - and his expression while doing it was priceless - sort of "what's the big deal guys? I could have done it earlier but just didn't feel like it."

Anyhow, this is becoming a novel, but I wanted to be sure to offer you plenty of support and "we've been there" advice.

-Libby

Angela said...

Seriously. That is *exactly* what Benjamin went through before they did an upper GI and discovered his duodenal webbing. (Also his spitup had increased since starting solids.)

He went rigid and straight almost every single time we tried to bend him at the waist. It was uncomfortable for him but we didn't know it.

If he's having any other issues, I would totally press for an upper GI just to be sure. Since B's surgery, that issue completely went away and he was sitting in less than a month.

The Lehnick Family said...

Hang in there Laurie...I know it is tough at times with all the milestones...It seems like Reflux may play a part in this? Not sure...Brayden did the bumbo seat just ok...and it just took time with the sitting...he will get there,...patience is a hard thing with all this Down syndrome stuff! You are doing an excellent job with him...don't get down on yourself...but you definately deserve to vent...It is frustrating I know...I am having a hard time trying NOT to compare him to my other two who were EARLY with everything!

JaybirdNWA said...

Laurie, it is a progression. He will not be able to sit until his little back muscles are strong enough to hold him erect. Personally, I would put him on his belly and let him play. In my post, I have outlined some principles that have been helpful to me. Hopefully, they will help you in your endeavors.

Lisa said...

Laurie, I hear you. That's one of the things that prompted my "failing" post the other day. Finn still resists sitting as well. It's frustrating, because his PT can get him to do it, but I can't, which makes me feel like I'm doing it wrong and I don't know what to do. I know he CAN sit independently - for a few seconds, mind you, it's not like he's ever sat there all on his own for long periods of time playing with toys - but he doesn't seem to want to.

I wonder if Dylan's trunk muscles are still being impacted by his surgery. What does his PT say about his sitting issues?

Amanda said...

I have absolutely no advice, but one thing I know for sure is that you are not failing Dylan. Don't even give that a moment's thought. You are an amazing mom!

Jeanette said...

I am a blank on advice as well. But I do want to echo the sentiments that you are doing great with Dylan. Sydney had a hang up on rolling over way back when... and now we are hanging up on eating. I think we all feel this way, so take comfort that you are not alone!

Megan said...

I know that I went thru a big down period (mood wise) right before Stella sat. I just felt like I wasn't doing anything right, she'd never sit, and I didn't know what to do. Then, low and behold, she sat. I do think, in general, there's a higher level of frustration (on their part and your part) right before they catch on to how to do something.

Mommy to those Special Ks said...

I haven't read all the replies, but have you tried a Bumbo seat? That was KEY to get Kennedy sitting. I swear she wouldn't do it and wouldn't do it and then when she was 10 1/2 months old I got her a bumbo. She LOVED it! By 11 1/2 months she was sitting on her own! We took that seat to restaurants and even used it in the back of shopping carts! It's GREAT!!!
Hang in there, it will happen!

Tim and Kelli said...

Lindsey is younger and no where near sitting on her own but she enjoys the Bumbo with the play tray. Our PT also showed us a corner chair that quite a few people also have used. Hang in there, he will surprise you one day.

Blagg family said...

You are many things Laurie: caring, sensitive, compassionate, and STRONG! The one thing you are not is a failure. It is so apparent that Dylan and Cassidy are loved, supported, and cherished - you can see it in their demeanor. Keep on keeping on - Dylan will get there! Much love - Josh and Karen

Amy said...

No advice, just :giant hugs:

Carrie said...

I don't know you and I simply found your blog through a comment you left tonight on MckMamma's blog. I have read only a small handful of your posts and it breaks my heart to read that you could possibly think you are failing your sweet little guy. From someone who has never met you, your love clearly pours out of every word I have read. It is clear that you are doing everything you can possibly be doing and I assure you...YOU ARE NOT FAILING HIM! You are loving him as beautifully as humanly possible and for that I admire you! What an amazing mother you are to be trusted by God with such a sweet boy as Dylan! God bless you!