Thursday, December 10, 2009

The Opposite of Munchausen by Proxy

For a long time now I have been sitting by and watching Phoebe take her sweet time to hit important milestones.

She's not walking yet. She's not talking yet. She barely babbles.

She didn't learn to sit up or crawl for a long time. Her first babble -- babble -- happened at 15 months.

She seems happy. Alert. Intelligent. Unfazed by her inability to move the same as her peers.

Because she's not in day care, her peers mostly consist of Lola and the few infants in the "Not walking yet" group at the church.

I have not meshed well with our pediatrician. He and I had different points of view on breastfeeding. I do not like his billing system. I am skeptical of his opinions.

So when he suggested I call something called Tri Counties Regional to ask them to evaluate Phoebe to determine why she's not walking or talking, I politely listened to him and then ignored him for two months.

Phoebe's eyes didn't even line up until she had surgery at a year old. How could she possibly learn to get around when -- in order to see straight -- she had to have her head tilted?

I wasn't worried.

Geoff wasn't worried.

We weren't going to be calling anybody.

And then we took Phoebe to the playground and she didn't want to ride on the rocking things. And there were kids much younger than her climbing on the toys, walking around.

And she sat there, happy to play with the sand and the leaves.

And then I spent the day with a friend and her 8 month old.

And I noticed that Phoebe's gross motor skills were the same as his.

And I thought "I'm going to call these people JUST to see what they have to say."

And two women came to my house for an hour and a half on Tuesday morning and told me that my daughter has Low Muscle Tone.

Internet, you are like the 5th person I have told about this.

Everyone has always commented that Phoebe is so flexible. I don't know what other babies are like because this is my first one. Sure, she can touch her nose with her toes. Easily. She LOVES to do it. It's a game we play whenever I get her dressed or change her diapers.

It's also an indication of low muscle tone.

Low Muscle Tone is not the same thing that I have because I haven't worked out in like 100 years. Low Muscle Tone is also called Hypotonia. And it means that there's something -- either in her brain or her muscles -- that is making her muscles just not work they way they should.

When we hold Phoebe in Superman pose, her head and legs hang down. She can hold them straight for about 5 seconds, but then they drop.

I was told on Tuesday morning that is what 2 month old babies do.

I've been spending the past few days trying not to imagine the worst case scenario (I don't even know what the worst case scenario is) and trying not to feel guilty for denying there was a problem in the first place.

I felt guilty for calling Tri Counties Regional.

I felt guilty for telling them Phoebe doesn't walk yet.

I felt guilty for thinking there was a problem with her not walking yet.

I felt guilty that they told me she has a problem and that's why she's not walking yet.

I feel guilty that she might never run or jump or play as well as other kids.

I feel guilty that I had a half glass of wine twice, a Guinness, and a half glass of champagne while pregnant with her and maybe? Maybe I caused this.

I feel guilty that I didn't ask for help.

I feel guilty that I need to ask for help.

I don't want to tell anyone that we had to ask for help.

I don't want her thinking she needs help.

She doesn't know it yet.

She thinks we were playing games with her.

She likes Superman pose and hanging her head and her legs.

She doesn't mind that she doesn't have the confidence to walk because she knows she's going to fall.

She might not learn to walk for a long time.

She might always be clumsy.

She might never play sports.

Jump rope.


Ride a bicycle.

She's not just "taking her time". She's not walking because she has an actual, physical problem.

In a few weeks, I'm going to get a phone call from Tri Counties Regional. They're going to be meeting with all kinds of doctors and specialists and what-not to determine Phoebe's eligibility for the program. The ladies who came to my house told me she will be eligible because her skill sets are definitely behind enough to qualify.

My daughter is going to be in a program.

They are going to decide where to go from here.

I haven't told many people about it.

I don't want to be asked a lot of questions.

I don't want a lot of attention about it.

I don't know enough to answer questions.

I don't want people looking at me or at her and taking pity on us.

I just want her to be a little behind the curve on learning to walk.

I want to not have a name for what she has.

I'm happy we have a name for what she has.

I want her to get help.

I don't want her to need it.

The ladies who came to my house on Tuesday morning told me that Phoebe has highly sensitive feet and so we were told that we should rub them often and especially against different textures so she gets used to them.

She has been enjoying all the extra attention we pay her feet with the lotion. "You want mommy to rub your feet with the lotion?"

She rubs her hands together (as if applying lotion) and smiles.

The ladies who came to my house on Tuesday morning told me that I needed to encourage Phoebe to stick out her tongue.

I told them I didn't want her to stick out her tongue, which is why I never taught her that. They told me I needed to as part of getting her to use her mouth. They were impressed that she eats everything and nursed and latched on with no problem. A lot of kids with hypotonia have problems nursing and eating certain textures.

Phoebe ate octopus last week. And raw white onions. And scrambled eggs. And fig a few months ago.

She loves textures of food. I haven't found one she doesn't like, in fact.

The ladies who came to my house on Tuesday morning told me that I should teach Phoebe sign language because it will be a way for her to communicate before she can talk.

I told them I wanted her to talk. I didn't want her to sign. They told me that when kids learn to sign they will eventually start saying the word while signing and then stop signing all together.

I didn't want to teach her to sign. It's trendy. And I wanted her to learn to talk.

And now I have to change my plans.

And just wait to see what they say when they call in a few weeks.

And rub her feet with lotion.

And try to get her to stick out her tongue.

And just hope that she'll be fine.

And just hope that I'll be fine.


robyn :) said...

meghan, this all sounds like the guilt i had when i found out lily was going to be born with extra fingers and toes. polydactyly...they gave me the name. i surfed the internet and read the WORST possible things that could be related, because the internet is famous for that. " i don't smoke or drink or touch drugs, but maybe it was sweet and low. maybe i shouldn't have worked with the chemicals at the nursery." i tried to think of all the things i did or didn't do. of course, i couldn't just accept that nature gets a little kooky in the gene combinations sometimes. it was stressful and we worried and we thought the worst and now, looking back, 2 surgeries later, normal and happy and showing off her toe removal scars, i wish i hadn't spent so much time whining about the what ifs and what nots. and then , this past year and a half, i was totally understanding every word my daughter was saying, but realized not everyone else was. it made me tear up one day, when a peer of lily's looked at me with a puzzled look on her face, unable to get what she was trying to say. (squirrel was being called, fwirl, for example) and the moment that really got me was when she was so excited, speaking sooo fast and she was stuttering on the same word. i said, "lily, just slow down and take your time." she started crying, "i can't say it, mama" we were advised by her former pre-school teacher to call the county for an evaluation, i sat on it for awhile until her speech worsened. she scored 100% on use of vocabulary, but only a 20% on how well she said the words. i was gut punched. here is my confident, cheery, very talkative little girl who is being stifled by her inability to speak correctly. so, we are in a program and lily is no longer calling "snowmen" , "toemen" and she is working on calling "fristmas", "christmas". the occasional stuttering was really just from her speaking so quickly and she is learning to take her time. these are things you don't always know about, esp when this is our first experience with motherhood.

phoebe is a beautiful, happy baby with very loving parents. her long longs will be kicking and a-running soon enough. some kids just need a little jump start and a little help. and that's okay :)

Meghan said...

Thanks for the encouragement. Unfortunately, low muscle tone is something she will have for the rest of her life. It will make her more prone to dislocating joints and will absolutely make her more clumsy. While physical therapy and speech therapy can get her to catch up and walk and talk, we just have to wait and see what her muscles will do. They don't respond like ours do, which is why she is so flexible -- the muscles don't know when to "stop" so they just keep going when we push on her legs.

She will catch up, and it might take awhile, but I'm also becoming very aware that a lot of things will most likely be out of her reach.

Potty training will be difficult (low muscle tone affects the bladder and bowels, too). She is always constipated -- no matter what we feed her (part of the low muscle tone).

It's not something that will just "go away" or that she will "outgrow". It's always going to be an obstacle.

I understand that we have no control over how genes are put together (it's crazy that people are born at all! lol) but I just hate knowing that her life is going to be filled with challenges that I will never really understand.

Meghan said...

Here is a really good description of what it means:

Children/People with low tone have to work 9X's harder than people with tone within the norm. Our muscles are ready to do work, whether its lifting a pen, brushing our hair, or even going to the bathroom. People with low tone first have to work themselves up to that point where they are ready to do work before they are able to do the work. That is why they tire faster, takes them longer etc. They are working 9x's more just to be able to do that work. Low tone never goes away, strengthening muscle tone, will help a person with low tone work longer and become easier but they will always have to work 9x's harder to complete a task

Katie DiSimone said...

Big hugs Meghan. I am sad that you had this happen to your beautiful girl...big big hugs.

I feel awful that you have all these important, unknown things coming up on the horizon. So much to process and go through. I hate nebulous, undefined, slow-to-develop issues in my I can't imagine being in your shoes.

I am super glad to hear that there are people in the County that can help Phoebe and you. Let's hope they get back to you quickly with some help.

mum22babes said...

I don't know you. I actually happened upon your blog by accident, but I just felt that you needed to hear from me. My son has had problems such as these. He had very low muscle tone for the majority of his first year. (on top of many other problems) He didn't hit his milestones either. We live in California and got him in with Regional Center. We have three therapists we work with an hour each, every week. He is behind still, but he is catching up like you wouldn't believe. The help will be games for her. She'll probably love it. And things WILL get better. Don't feel guilty for not understanding the problems. Don't feel guilty that you didn't get help before now. Perhaps, you weren't quite ready..and that is nothing to be ashamed of. It is a difficult thing to come to terms with having a special needs baby. There will be days in the shower that you will cry, just so no one sees you. You will spend sleepless nights and may feel a need to confess to the slightest stranger what's wrong with your baby. I do. But the thing that I have learned is that God sent my son, and God sent your beautiful daughter to you for a reason. Because you will become her biggest ali. When she waves for the first time, or stands on her own, or creeps on the floor or sticks her tongue out or signs the right word for the right will be overjoyed. You'll call everyone you can possibly think of. You will be so much more excited about the little things that babies are "Supposed" to do when she does them and through that you will see what a beautiful thing childhood is. You are a beautiful mother and the people around you will understand that simply by the way you look at her. Grieve over what is going on...and don't feel guilty for it. Cry, yell, throw your hands into the sky..and then settle..and love your blessing. I can promise that just as you have much to teach her..she will have much to teach you.

Unknown said...

i came here from your tweet...and feel like i don't know what to say, but couldn't just click the 'X' and leave.

i think the biggest thing that hit me reading your and phoebe's story is the guilt thing. i wish there was some way to get rid of that for every loving mother. why do we feel so guilty about everything? *sigh*

your love and devotion and advocacy for phoebe is pouring out and i can tell that will continue. i wish you the best as you continue to walk this journey. maybe not the one that you planned, but beautiful nonetheless. she is still your phoebe. (and i know you already know that!) =)

Stephanie Precourt said...

There are many things I don't write about much or at all and one is about my special needs child. (I don't "not write" out of embarassment, just because he is older and I want to be mindful of what's for the public to see). He's in special Ed and we've been thru a lot.

Guilt is normal. So, yay! You're normal! :) But I know this list of things. The help is awesome and could be key to future successes. It just sucks that you need it in the first place.

One thing I have learned- nothing is impossible and what the doctor says or specialists or evaluations might sentence Phoebe to- it's not the final word. Especially with you as her Mom. I can sense you already know God has a plan and He knows how this ends.

And if I might insert cheesy scripture? He who began a good work in Phoebe will be faithful to complete it.

Much love and prayers,

Geoff said...

It's gonna be ok! Love you guys...

Allison said...

You're a wonderful momma, a beautiful writer, and you all will live and adapt to this with grace and humor and strength. I'm so sorry you've been dealt this. It's not easy growing up with extra hurdles, but what makes a kid able to deal with what life throws at them comes from the parents. You're teaching her that she is loved and funny and beautiful and limitless in her potential. Thank you for sharing, Megan. There's no pity for you here, girl. Just best wishes.

Anonymous said...

Brilliant writing! You cover all the emotions and thoughts that go through a parents head, simultaneously, barraging at each other and making us feel guilty, not guilty, confident, in denial, hateful, loving ... gosh

Meghan, you sound like a great mum, being naive is not a crime (although it appears so at times) and not knowing something doesn't make you a bad person, or negligent. Gosh imagine the cavemen they must feel awful not knowing about computers!

Your bub will be fine. She sounds happy, you sound happy, you sound playful together, you are loving, you enjoy things. Her brain isn't having difficulty, she isn't having difficulty, she's content.

What she doesn't do now she will well make up for when she's a teen, and then when she's an adult, so focus on the future, not the now.

Encourage her to be all she can be, not what someone else says she can't be.

Give her the world, not the local do gooders who failed in their own lives.

Instinctively you know your baby better than anyone else. You might not realize this today, or tomorrow, or the next day, but every day in the future, you'll look back and think 'Ahhh yes, I remember that, now it makes sense'

Rock on girls!