Thursday, June 30, 2005

Therapeutic Drowning

How much therapy is too much therapy?

When Ellie first started therapy, her therapists were always deferential to how much therapy "we" could handle. They didn't want to overwhelm the family.

I didn't understand that. I was so isolated - with a sick newborn, I barely left the house. I loved the therapists' home visits; they were my therapists too. Also, I believed that the therapy was helping Ellie. How can you have too much of that?

Later, I learned that it's hard to go out and do things when your child sees 4 therapists at home each week, and I found myself occasionally resenting Ellie's sessions. I decreased the frequency of her home visits while increasing the overall amount of therapy she's getting (she sees at least one therapist a day at school). A perfect solution.

Right? But -

I made the mistake of talking to another mom of a little girl with Down syndrome. Her daughter gets more than just the Physical Therapy, Occupational Therapy, Developmental Therapy, and Speech Therapy that Ellie gets. She also gets Music Therapy and Hippotherapy (Therapeutic Horsemanship). And apparently these have been the Best Things in the Entire World for the little girl.

And the doctor says that Aquatic Therapy is great too; we should sign up for that.

Aquatic Therapy and Therapeutic Horsemanship are both at least 30 minutes away from home, without traffic.

Therapeutic Horsemanship and Music Therapy are expensive (and not covered by insurance or First Steps).

But they're so important for helping to build strength, promote balance, improve receptive language, encourage walking - how can you say no to that? Don't I want the best for my child? Don't I want her to become independent and self-sufficient?

I do. And so I'm torn, because, truthfully, it's a bit overwhelming. It's a bit much. It could easily become my full time job plus, my whole identity. It could easily lead to an over-scheduled child who has too little down time at home.

Or so I tell myself as I don't make the calls. Maybe we can do Music and Horses monthly instead of weekly. Maybe we can just go to the pool instead of having Aquatic Therapy. Maybe my kid needs time to be a kid.


she falters to rise said...

All the therapy in the world will do nothing for Ellie if you are exhausted and unhappy. There is always a point at which a good thing starts to become a bad thing.

Doing too much will not only exhaust you, but it will cause Ellie to burn out too. My mom would always get frustrated with parents who had their kids in everything from dance lessons to spanish classes to swimming...the kids would end up falling asleep at school and not wanting to play with their friends at recess.

From your blogging, it seems like Ellie is doing very well in several developmental areas. Maybe you could make a list of all the types of therapy available in your area and then select which ones target Ellie's current weaknesses. You will probably find a lot of redundancy when you really look at the therapies, so you could pick those that work on the most skills. You could also pick the aspects of Horsemanship and Music Therapy that you think would benefit Ellie the most and work those skills into your daily routine. You can get the same Music Therapy textbooks used by therapists at Amazon if you wanted some resources to help you, and there are other ways to work on motor development (balance balls, etc.).

"Maybe my kid needs time to be a kid."
Very true. Just remember that you need time to be a mom and a whole person too.

Jessica said...

Great post, Sarahlynn - I can only imagine how torn you must feel regarding all this.

I'm no expert but every time I'm around Ellie (and Scott says this, too), I just see an adorable, loving little girl who is tremendously happy. I know you want the best for her developmentally but no therapy in the world can provide what you and Paul give her every single day.

ccw said...

I'm hesitant to comment b/c I know next to nothing about Down Syndrome and do not want to say anything to offend you. But, I will comment and if I stick my foot in my mouth, please feel free to tell me I am an idiot and help me to better understand.

It is possible to have too much of something, even if it is good. I think it's wonderful that you are thinking this through and taking in to account your own well being, in conjunction with Ellie's. As a parent, it is very easy to "lose" yourself in favor of becoming "so and so's mom/dad".

It seems that you and your husband are very devoted parents and are doing a wonderful job as parents. I don't think it is possible for you to short change your daughter b/c you are taking so much time to figure out what is best for her.

I sincerely hope that you find what works best for you, your marriage, and for Ellie.

On an unrelated note, Ellie is absolutely beautiful!!

Orange said...

I know cerebral palsy and Down syndrome aren't remotely alike, but some of the same therapies are touted. My cousin's son is 9 years old and he's done hippotherapy—for free at his grandma's house, where they have a miniature horse and a big pony. (If only you lived southwest of Chicago, but not that far southwest). After a giant malpractice settlement came through (horrible birthing experience), they had money to buy a hot tub for casual aquatic therapy at home. I bet Ellie could benefit a lot just from going to the pool and being in the water; it's great for so many kids.

My cousin doesn't schlep Tyler around to quite as many appointments now (he gets a lot at school), but she used to be a miserable wretch with no time for herself. She was driving an hour each way to PT at the Shriners Hospital, for example. She was harried and exhausted all the time. I don't recommend it.

I know it's really hard to strike a balance between "doing what's best for the kid" and "doing what makes the mom happy," when the mom needs some time to chill out. It's a lot harder to take that time for yourself when you're taking your kid to appointments. If you do opt to sign up for the new therapies, I hope you can get extra time to yourself during the evenings and weekends—impose more on friends and relatives who are willing to babysit. Make sure your husband is pulling his weight to give you some breathing room before you approach the breaking point. And use some of that babysitter time so you can be you (and not just mom and wife)—writing alone in a quiet house, going out with a friend, seeing a chick flick, whatever.

Sorry to ramble on so long! What do I know, anyway?

Tara Marie said...

Sarahlynn,,,,I have no answer for you regarding that question, that is something you will have to come to find out on your own....but I will let you know that I was at the same point you were at [but only 3 months into my journey in Holland]. We opted out of EI completely.

My little girl was four in May and is the most delightful, happy, inquisitive, creative, and blossoming little girl. Her Mommy is learning to be the same way.

I have always looked at Emma Sage as not something that needs to be fixed [with a long list of therapists] but as a little person that needs to be loved, nurtured, encouraged, stimulated and given the opportunity to learn in many different environments.

We *do* aquatic therapy [at the YMCA in the Mommy and Me, little guppy and now a minnow on her own, classes, with other children. We *do* hippotherapy at a stable with just general riding lessons. The benefits of riding a horse come from being on the horse, learning how to handle your body to stay on the horse, interacting with the horse, talking to the horse, brushing the horse, putting on and taking off the riding gear [and this we do for a lot less $$ and for me 'the stress', of having a therapist tagging along to do the same thing that we are accomplishing in a typcial enviroment].

Please don't take me wrong,,,,I believe professionals, schooled and trained, in therapy to be wonderful and amazing much so, that my oldest daughter is looking into attending college to major in either PT/OT or ST....she has been so moved by working with her baby sister that she had decided to make it her life's work [and she is incredible with her little sister and I know that she will make an amazing therapist].

But for me,,,,the whole *therapy* thing really got in the way of our 'rhythm of life' was a focus that I was not comfortable with and a focus that I did not want my daughter to some day resent. [and that comes from taking to many adults with various disabilities and their recollection of their childhood and being subjected to structured therapy].

One young woman with T21 told me that "She used to have Down syndrome when she was younger like my daughter"....her mother later went on to tell me that she says that all the time now and she believes it is because now that she is a grown adult and living a typical life [working, volunteering and taking night classes at the continuing education program] and the focus of her life is *NOT* on therapies, that she believes that she no long has a condition that she equated to the therapists and special educators.

You daughter is so precious. I am so glad I found your blog through 'Postcards from Holland'.

Please know that if you slow down, or pick-up therapies through out Ellies life,,,,,she will always be the beautiful little girl that she is destined to be and she will grow and develop into the best person she could be, because she is loved,,,,,,and truly that is all that really matters.

Peace, Tara Marie & Emma Sage 4

Cjara said...

This is a difficult subject for me, because son currently gets an hour of speech therapy and an hour of Developmental therapy a week (also known as Early Intervention).

A total of two hours of therapy per week, at 4.5 years of age, (in England they start school at this age. That to me is frightening!)

There were many times I wished he could spend a couple more hours with those two wonderful ladies. He likes them very much, has loads of fun with them and he hates to see them go.

But no fear of that ever happening. The insurance would never pay for it.

But I wouldn´t want to go to so many modes of therapy either. I´m sure they are all very good, but that would be overkill for us.

PPB said...

I love music, I love pools. Horses are...okay. I bet you like some of those things, too. You don't need a professional to guide you through those activtities with your daughter, just have fun with it. Remember this was a mom recommending these things to you, not your doctor. Ellie's doing great. (I'm not meaning to downplay those therapies---I've taught adaptive aquatics and I majored in music therapy for a little bit, but I really don't think they're necessary for Ellie)

And on a day like today, I'd be inclined to head off to the pool with my rubber duckie and my daughter and announce that you're doing aquatic therapy (even better if aquatic therapy comes with a fruity drink with an umbrella in it)

Psycho Kitty said...

I'm sort of late commenting...I've been running around like a maniac and so forth, but...
I totally get you here. In our situation, I ended up trying to strike a balance between 1) what the therapy targeted, 2) the overlap between therapies, and 3) what my insurance would cover. So, for example, while we did OT, we didn't do sports. When the OT tapered off, we then moved to swimming and Tae Kwon Do. When he starts his group play therapy, we'll taper down the individual therapy sessions. I decided to hold off on music therapy (targeting his trouble with audio filtering) so that we could continue with the physical activities (targeting his greater problem with touch/sensory stimulation). We're doing acupuncture but have slowed way down on it because insurance doesn't cover it. And because of all this *stuff*, I've nixed any "extra" recreational things for the summer. And it still sounds as though we run around like maniacs. Sigh.