Intensive Therapy

UPDATE:  We spent an hour with Parker at Now I Can today.  Of course the minute Parker walked into the joint he went into total whacked out sensory mode.  It was awful.  It was also an actual smack in the face reminder of the OT my son needs and isn’t receiving.

I filled out papers and Parker had the assessment.  The PT did a series of pressure moves and Parker calmed down immediately.  It was like magic.

The more we talked with the PT the more excited I was about trying to get Parker into this program.  It was obvious that Parker would receive a couple of hours a day having his intense sensory needs met, and that made my heart soar.

But then, and this is going to sound nuts, but then I just felt off about it.  Not that it isn’t a great program, because I think it is.  But because I just don’t think it is $6,000 of a program for Parker.

Suddenly all I could think of were the families fundraising to keep their children alive.  Families fundraising to bring a child home from an orphanage that would one day be sent to an institution.  Families standing on the side of the road trying to get enough donations to feed their children that night.

I’m not sure how to explain it.  I absolutely think that Parker is worth every penny this program costs.  I know how hard money is to come by these days.  Yet when I looked at this program closely and I thought of six thousand dollars, it just didn’t make my heart feel the happiness it should have if I were making the right decision.

Yes.  I am weird.  But I take every single penny donated to Parker very seriously.  Every single penny has to be spent the best way possible.

I’m so discouraged that our school district puts so little forth in Parker’s behalf.  I left the original comments to this post below.  There are others who have or do live here and totally understand what I am talking about.

I’m angry I’m not able to provide enough therapy for Parker to be able to walk down a flight of stairs, or ride a bike.

I’m a pretty smart Mama though.  I’m hoping I can teach myself how to teach Parker these things.  Then I can thumb my nose at a system that is not only broken but takes out it’s issues on the weakest among us. 

If I counted up just the days missed by the therapists assigned to Parker by our school district…….it would be a significant number.

If I allow myself to focus too much on an OT who waited two years to get Parker on a sensory schedule or has never even properly assessed my child in order for me to try and get more help at Primary’s……well, the anger doesn’t take long to come to the top on that one.

There is a slight chance (but not really, I’ve tried this before) that Now I Can could code things so that our private insurance would cover his sessions.  I know better than to get excited about that though.

For those of you who have already donated, I refunded your money.  Thank you SO much for believing in Parker.  It means the world to me. 

Much love,

Tammy and Parker

_______________________________________________________________

Friday’s are the days Parker’s PT comes.  She’s been working with Parker since he  left Early Intervention.  She told me that she won’t be coming to see Parker over the summer.  He no longer qualifies for summer PT sessions.

If truth be known, he really no longer qualifies, as far as his school district is concerned,  for her to come once a week anymore.

Shall we all pause for a moment of panic here?

No more physical therapy?  At all?  For a kid that can’t go down stairs by himself, run, jump,  ride a bike, hit a t-ball and a thousand other things most 8 year old kids can do.

Getting measured for an adaptive bike.

I’ve been tossing the situation around in my heart for weeks now.  If Parker lived in most states besides Utah, he’d be receiving SO much more in the way of therapies.  You know, the whole ‘if wishes were fishes’ thing.

In Utah you’re told to host a BBQ in situations such as this.

I’ve been looking into Now I Can, an intensive therapy facility. I’ve talked with them over the phone, talked to several other parents and therapists.  We have an appointment to tour the facility today.

But the price.

$6,000 for four hours a day, five days a week for three weeks.

Go ahead.  Take a minute to pick your jaw up of the floor.

It works out to what…….$100.00 an hour for intensive therapy.  This intensive therapy also brings in a lot of the sensory input Parker seeks after, and we are seeing success with.

head measurement for a bike helmut

While we are there for our visit today I’m going to ask if we could perhaps do just two hours a day, bringing the price down by half.

Intensive physical therapy is a relatively new idea in the United States, but has been practiced in Europe for over a decade. This effective therapy involves performing exercises over an extended period of time — 5 days a week for 4 hours a day. Most clients visit Now I Can for 3 or 4 week sessions. Studies have shown that a 3-week session of intensive therapy helps a child realize the same goals it would usually take a full year of traditional therapy to achieve.

It’s humbling, this fund raising thing.  I’d rather never have to do it again.   But we’ve been committed to providing the best quality of life possible since Day One.

Walking down a flight of stairs.  Running.  Hopping.  Jumping.  Skipping.  Riding a bike.  Kicking a ball.  All of these are skills a Brave Hero should have at his command, don’t you think?

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Frankie B says:

    Have you ever thought about leaving the state? We moved from your current state for the sheer fact that there is NOTHING there. You are ranked 45 out of 51 ( because DC is counted) A close neighboring state are throwing hours at us. To the tune of 35 hours of HELP just for me as the mom. Not to mention the 3 times a week therapy that we are getting IN HOUSE. Not to mention what we get at school. There is a district here that is 7 miles wide and 7 miles long. Why not make a move. Move for the same reason others do. Because we can’t afford to stand by and watch our child get nothing.

  2. Marianna says:

    Dear Tammy and Parker

    I’m not in a position to make a big donation, but I have given what I can and I wanted to comment so that anyone else reading this can see that other people are giving too – we can all make a difference together if we can’t do it alone. I learn so much from your family and I am glad to be able to help you as much as I am able to.

    Love, Marianna in England

  3. I am so sorry that Utah sucks so bad for providing services to kids like Parker. It blows my mind that it is that backwards. Because my husband is in the military we don’t actually live in Utah but are residents of it and it makes me mad that my tax money is not being spent well. My own son would be facing issues with getting therapy if we lived there and it makes me sad. Luckily we have lived in states where we could get great care. It is such a shame that special needs children are having to go with out.

  4. Lacey says:

    I agree with the first comment! I know it’s soooo hard, leaving everything, but Utah in fact just plain sucks when it comes to special needs! Which is interesting since its supposed to be such a family friendly state, and the children per family is one of the highest there! Truth is, it’s a big reason we moved as well! I would seriously consider it, although I know sometimes it seems impossible to think of moving!

  5. Frankie B says:

    Honestly, you are asking how you get the services, you move. We have done it twice. We went back to the “family friendly” state of Utah to only get screwed and told we were “functional” and couldn’t recieve ANYTHING unless we got on medicaid, To do so would me either we had NO income, lied, or legally seperated. Your husband is marketable… so market. Look at the list, Vermont #1, Arizona #2. Utah #45…. I would be looking at lovely green trees or cactus. Then half your money issues would disappear. And awesome programs would suddenly Reappear. Check out Laurens institute for Education ( LIFE) on google. How would you like that day program. They have school for kids just like parker. Small, SCHOOL.

  6. Frankie B says:

    Oh and there is a center for conductive therapy in Tucson AZ that does scholarships.

  7. too bad I am not longer at NIC, it would have been a great experience seeing great outcomes in Parker’s neuromuscular system.

Speak Your Mind

*

CommentLuv badge