Sunday, May 3, 2009

At a Standstill

Right now, I feel like we are...stuck. We are stuck in a developmental rut and I don't know how to get out. How to move forward. In all honesty, I do not think I've noticed any progress over this past month, I really don't. I think back to where Dylan was last month and even the month before, and I'm pretty sure we have not moved forward. Even just a tiny bit. What gives? I understand that Dylan's development may be slower, but my concern is that we aren't even moving at a slow pace. We don't have a pace. In fact, I'm pretty sure we are at a standstill.

The two biggest struggles right now are sitting and feeding.

Sitting. Ah sitting. I swear, I try everything that I can possibly think of (yes we have a Bumbo, no he won't sit in it) but boy is he floppy! And when he is not flopping, he is arching his back due to reflux meds that aren't working properly (grr!). Sigh...I feel as though we are exactly where we've been for weeks and weeks and weeks. His PT tries to reassure me after each session, "He's going to get there! He is!". Again...I know this. I do. I just wish...I just wish I could see a tiny bit of progress. Maybe if he was able to sit - just for a second. Something. Anything. But, you know, it's not really even about sitting, I suppose. For me, it's about progress. About seeing a progression. Something to go on so that I can find hope and belief in the statement that he really is "going to get there".

And feeding. We're stuck here as well. Now, I must say, he does very well with eating lots and lots of stage two foods. In fact, he will eat just about any fruit or veggie (or gross meat/rice/veggie combo meal) that is offered. Our eating problems consist of the solid food (I mean, real solid food) and weaning/sippy cup variety.

Dylan's OT recommended that I start trying to give him those puff thingamajigs. Now, just so you know, on a good day, I am absolutely petrified of choking, so to sit and watch Dylan choke and gag on a puff (all the while smiling and telling him, "Good boy! Yayyyy!" so that he thinks this is all really fun and not scary) is pretty much torture. I have also tried those Baby Mum Mums and those didn't go over well either. Our OT has said that Dylan is "hyper sensitive" and thus the strong gag reflex. She said to just keep at it. So, we are.

I have also been trying (although not very hard...ahem) to wean Dylan from nursing. I have begun offering him a sippy cup with formula every day after lunch. I know there is a whole sippy cup debate out there, so maybe I shouldn't even be attempting the sippy? The honey bear cup just seems...I don't know. Like it probably won't work? I guess I just want him to have some independence with feeding. I have also tried a bottle as well as a cup with a recessed lid. Both basically unsuccessful.

Am I doing something wrong? Or...maybe it's not necessarily what I'm doing wrong. Maybe I'm just not doing something quite right. Or maybe this is just...the way it is.


heather said...

I'm sending you a big hug! It takes a lot of patience to be a mom with a child that has special needs. Progress can seem slow or nonexistent at times but that doesn't mean there aren't developmental growth spurts too. I used to get so frustrated when I was taking Morgan to private speech therapy when she was 3 years old. The therapist always expected big changes and growth each week and would ask me if I had noticed a big change in her speech over the week. Sometimes I felt like lying because I didn't want to disappoint her and it was easier than trying to explain that things don't just happen in a week with Morgan. It takes weeks, months and sometimes years to see progress. Oh but how sweet it is when she does reach that milestone. It makes all the hard work sooooo worth it! You are doing a great job and remember that each child is on their own journey...not race. :)

Mindy said...

Liam didn't use a sippy cup until he was 15 or 18 months old. Give it a break and try again later.

As for the developmental plateau, we go through them here. Months and months of nothing (so it seems) then all of a sudden it happens.

There's nothing you're doing wrong or not doing. It is what it is.

Angela said...

Oh, Laurie, I'm so sorry. IT SUCKS. Plain and simple.

Benjamin would never sit in the Bumbo either. Waste of my money. Back when we were trying to work on sitting, he would *always* arch his back b/c of his intestinal stuff (that we didn't know about). Then once that was fixed and he started sitting, he just wanted to get out so he could move around. Ugh. Maybe my next baby will get some use out of it and make me feel better about the purchase. LOL

AFA the eating, I really have no advice. (Not that I did with the sitting thing either...) Andrew (my oldest) was and still is a horrible eater. He would always gag on stage 3 foods and has just always had texture issues. Even now as a three-year-old, every meal is a battle. And I. Hate. It.

Benjamin is on a bottle still (weaned him after his 2nd surgery in January b/c my milk supply pretty much dried up) but is on 100% whole milk now. (But I have to warm it up or he won't drink it.) We have tried a few sippy cups but nothing has been remotely successful. His pediatrician says her goal for him is to try and be mostly off the bottle by 15 months. Sigh. That seems so close now.

Jen said...

Like Mindy said, I have found that there will be no change for months, then this great spurt will happen and you'll say "who is this kid?"

I think sippys are moderation. We ended up using just a regular cup with Evan, though we had to hold it for him for a good long while. And I think he started using a straw cup around 14 or 15 months.

I had a total freakout once when he was about 10 months old, because I took him to the store and tried to put him in the shopping cart seat instead of his carseat. I propped him with jackets and purses and still, he fell right over. I got so depressed about that. And then, like a week or two later, he just started sitting up. It's like he was saying "well, I'll show you!".

Have you tried putting Dylan in front of a mirror on the floor while you're getting him to sit? That worked pretty well for us.

Oh, and all three of my kids choked on puffs at first. It's hard for any baby to figure out what to do with that kind of thing. Why don't you try some small cooked pasta, like shells or macaroni? At least it's softer.

Sending big hugs your will get better. He'll get there. I know it's hard not to lose your patience with it all. I'm still doing that.

Ann said...

Hi Laurie. Just wanted to share that we're in the same boat but our issues are with crawling and food. Caleb will sit up a storm but doesn't want to move to get anything. He likes everything within grabbing distance. When he tries to go further, his foot gets stuck underneath his Buddha belly. I too feel we haven't seen any progress in a while. I just try to remind myself that I've never seen a person with Ds not walking so my mind knows we will get there. Caleb is also stuck on Stage 2 foods and gags and chokes on the puffs. We just got a feeding specialist and the interesting thing she told me was that they don't recommend Stage 3 foods. She said it's confusing to them. They think they're getting something smooth and then, whammo, there's a pea. We're working on, "Taste then consistency". This means I'm going to blend our table foods to the consistency of the jar food he's used to so he can get used to more taste. Once he's used to more taste then we'll work our way up on the blender settings until he gets used to a different consistency. Anyway, that's the initial plan we just set up. Hope this "sharing" helps.

Amy said...

:hugs: I'm not sure I'll be able to offer any help at all. Just wanted to send hugs.

Sharon said...

Having Brennan has been a big lesson in patience. He started sitting at 11 months - and it was a huge surprise when he did. For months, he would do the back-arching thing...then all of a sudden, he was sitting and has been ever since. It WILL happen. Now he hated being on his stomach b/c he loves sitting, so the crawling thing seems very far off (since it would need to be horizontal for that!). So, I don't have advice other then - hang in there!

For feeding, I went to a workshop at the DS Clinic last summer which was really helpful and gave a good overview. Like Ann, they said not to do stage 3 foods. They're having the workshop again on June 29th - it's definitely worth going. Or ask your EI coordinator if you can have a consult with a feeding specialist and get some suggestions from them. Brennan went to a feeding specialist and she was hugely helpful. In the beginning, the chewy tube was great for strengthening his jaw and getting him ready to chew. I'd be happy to talk to you more about what we've learned. Hope this helps!

Cate said...

Yeah, there are no right answers. We have one OT who says sippy cups are the devil's own tool. And other people say, eh, why not?

Do whatever works. Try not to stress. He'll get there.

Jessica said...

Deep breaths. It'll be okay. Drew goes a month or sometimes longer without any progress and then SURPRISE! he'll blow us away. I think its normal for kids take breaks in their development. As far as the feeding goes, follow your mommy instincts and do what feels right. We can't always do what the experts say, especialy when they're saying different things :)

Jeanette said...

We are TOTALLY stuck in the food thing. Sydney (21 mos) eats some solid foods of all textures, but REALLY prefers the baby food. (stage 2). Both of my other kids choked on stage 4 foods. They expected them to be pureed and they had chunks. They were just bad news for us. Syd did well with the melting puffs. I don't remember her choking on them. they melt really fast. You can try breaking them in half.

Nicole said...

I know EMily is only 6 months...but I know what you mean on the standstill. Her PT is having us hold her certain ways to help with her back arching so that she may eventually sit....ans told us to never use the Bumbo because it is not meant for any child that has high or low tone...waste of money. As for the sippy and that...I am not there yet, but I do know that with any child it is usually a task to get them to switch. He'll get there...keep your head up!

Bethany said...

Try not to get frustrated. I think I remember feeling like we would never get there with Payton and as soon as you start feeling that way, it is like they move on. Our kids never give us notice of when they will do something ... it is like they just up and do it out of nowhere! Hang tight!