Friday, October 30, 2009



So, this afternoon Finn had his first PT session in about six weeks. I've been not looking forward to it, because the truth is, as I've mentioned, Finn seems to have regressed since we decided to reduce PT from weekly to monthly. The main area in which he's regressed is bearing weight on his legs - he just won't do it. Oh, he can. When he wants to, the little booger. But he usually doesn't want to and is therefore very resistant when made to stand. And because it makes him so mad, I've given up on trying to force him. And as this PT session approached, I figured Eun would blame me for his lack of progress (a few months ago, she predicted that he'd walk by 16 - 18 months! Well, he's just about 16 months now and nowhere near walking) - my decision to reduce the frequency of PT, and my failure to therapize him myself.

She was nice. She wasn't at all accusatory. And she still seems supportive of (resigned to?) our decision to reduce services. But she did note his regression in bearing weight on his legs. And she did suggest that he has regressed because of lack of therapy. And I feel like crap. Or at least torn.

What is the right answer here? Because I really don't know anymore. She reiterated today that regardless of therapy, he will eventually walk - it's a matter of when. Well, sure, I'd love to see him walking by his second birthday - that seems like a reasonable goal. But what will it prove? How will when he walks improve his life? He's happy. He's healthy. And he's enjoying a babyhood not crammed full of therapy. Which I value a great deal for him. So there's that. On the other hand, I still often feel like I'm failing him. Should I be pushing him more? And why?

I don't have the answers.

I do know that I am not going to hold him up by the hands and force him to walk laps around the living room like Eun thinks we should be doing. I don't want to be the cause of making Finn unhappy. I don't want my time with him to be spent doing something he resents. I know that as a parent, of course I make my kids unhappy quite often by making them do things they don't want to do (like brushing their teeth, making their beds, and finishing their homework), but this is different. This is more an attempt to fix him or make him be normal, or something. At least that's how it feels.

Who was it (Julie?) who commented on one of my recent posts that if our family lived on a deserted island, Finn's disability wouldn't matter at all? The fact that he is almost 16 months old and doesn't yet walk wouldn't matter. It only matters because someone has decided that he needs to hit certain milestones within certain timeframes, or . . . or what? He fails?

Obviously I have very mixed emotions about all of this.

Anyway, Eun did suggest that we might want to buy a walker for Finn - you know, one of these:

And that this may be a way for him to exercise those muscles himself without my having to force him and make him all unhappy. So this is an option I'm considering.


On a lighter note, this is Finn's new favorite toy:

It's a purple plastic teacup he stole from his sisters' tea set. He carries it around everywhere lately, it's funny. He likes to bang it on stuff, but he also holds it properly by the handle. And holds it up to his mouth properly. Maybe I should be using this to get him to drink from an open cup!


Larry said...

Hey Lis, Try not to beat yourself up - all development goes in bursts and lulls so I am sure he will get there just fine. I think so long as Eun's feeling is he will walk and run etc just fine, just later without more therapy, then why torture him? The only reason I could see to revisit more therapy is if she thinks that somehow him being older, bigger, heavier etc. when he is learning to walk will somehow make it harder for him to successfully master walk/run etc. If that is the case then maybe that is an argument in favor of pushing a little more now despite his unhappiness versus letting it play out. But if that is not something to be concerned about then really, who cares if he walks at 16 months, 2 years or 3 years? Lisa

The Boltz Family said...

Thank you for your post today. I just put something on my blog a few days ago that is of similar thought, and I actually felt some shame in letting it be out there, in admitting how I felt about things. Even though I do not comment often, I always find your posts of great value to me.

Anonymous said...

I wonder if it because he is the youngest not just because of DS? Often the youngest take their time since they have so many sibs to do more for them. I agree with Larry though- it will come in bursts and lulls. I always find the more I push my daughter the more she resists. Your therapist sounds like she has some perspective but I think it's pushing it to imply he's regressed due to d/c'ing PT!

Esther and Brian said...

Lisa, my boys loved this type of jumpee thing and I know that it helped them to get their muscles stronger:

Do you think that Finn might enjoy this? My twins surely loved it earlier on. If I lived in your area, I would just give this to you!

SunflowerMom said...

Lisa, I'm sorry to hear that your session wasn't a more positive situation.

Honestly, I feel that Eun's opinion about Finn walking between ages 16-18 mo is extremely optimistic. Of course, it's nice to set high goals, but that's a very high bar for a child with Ds. You know, of course, that the average age is between 2-3. It takes a lot of muscle control and strength to walk, as well as motor planning.

Waiting for them to walk is a long process, but it does happen and it will happen when they are ready. Sean was in weekly therapy, as well as hippotherapy, wore Sure Step inserts, and had a lot of learning opportunities at home. He still didn't walk until HE was ready at age 30 mo.

I made this video of his road to walking right before he started preschool:

When he takes his first steps, you can see how the first time I tried to get him to stand, he used that low tone to his advantage to turn his body to butter. When he wanted to do it, He "turned on" his muscles and stood up. Looking back, the only thing I would of done different was to get the car walker earlier and not use the first walker- it allowed him to bear weight on his torso instead of his legs, so he didn't work as hard to walk with it as he did the car walker.

I absolutely would NOT get a walker like you posted. Most therapist would agree, they do not help a child learn to walk or bear weight, because the weight is on the crotch. Instead, use opportunities for him to stand and play: sand/water table, activity table, toys on a shelf at his standing height, play kitchen.

You can help him meet this goal, and you don't have to push him by making him walk around the room holding your fingers. And you don't need extra therapy sessions.

Few more ideas for strengthen trunk: a step stool next to a bookcase, he can practice going from sit to stand to reach the toys. A large ball (bigger than a soccer ball)- set him on top to bounce, shift weight & recover. A child's broom- he stands, holds one end, you hold other. It gives him the stability of holding on while actually bearing his own weight.

Well, I can list a dozen ways to include therapy in his regular play, but you get the idea. It's just something that takes time. No amount of pushing him is going to speed it along.

Brandie said...

We let Goldie play in a jumparoo. The PT wasn't crazy about it, but it was a big help to me, she liked it and did do some standing in it. We also borrowed a walker to use outside in the driveway, but she didn't get the hang of it. The activity tables were great though and then a walker that she could push. We helped at first until she could do it alone. I have to agree that 16-18 months is a pretty lofty goal.

Susan Carson said...

I'm so sorry about your struggles with this- the last thing any of needs is guilt! I was also struck by that comment about the desert island. One thing the EI therapists pointed out (when I asked what difference does it make WHEN he rolls over, etc) was that it's important for babies to be able to move around enough to manipulate their environment so they can learn about their world. In other words, meeting the motor milestones is important not for themselves, but to help with cognitive development. That made sense to me. So it seems that the walker is a great solution- not so much to help Finn walk earlier, but to give him a similar experience in getting around and learning about his world that he would have if he was walking. Similar to propping a baby up in a chair before they can sit on their own, so they can view the world from a different vantage point.

Leigh Anne said...

i agree w/ sunflowermom...

walkers are not a good idea. i've read that they are bad for hip development and really aren't good tools for teaching walking.


Walkers reverse the normal process of neurological development, giving the lower half of the body an ability that the upper half is not yet ready to cope with. Studies have shown that infants who spend a large portion of their day in walkers may exhibit delayed motor skills, especially in learning to walk correctly. (from dr sears' website)

datri said...

I'm going to jump on the "don't get a walker" bandwagon. I'm surprised it was even suggested. I'd go more along the line of push toys and those table toys that might motivate him to stand up and play. Therapy should be play anyway, not work. I've never been one to force my kid to do things she doesn't want to do. Probably why I wasn't so great with the ABA, or the sensory brushing, or the oral motor activities. So, Kayla might not talk (and I honestly don't think that doing all those oral motor skills would have helped her) but she's happy and that's all I really care about.

Carla said...

Oh, Lisa, this is so hard and I don't have any experience with it. I just wanted to say that if you approach it like you have everything else in the time I've known you, I know you'll make the decision that is right for you and yours. Educate...and then follow your gut. Hugs.

Anonymous said...

My daughter didn't walk until she was three, she runs now. Come January, we're starting track and field with Special Olympics. He will walk, in his own time.