Comparing Therapy Service Providers - Part 2

When Goldie was a year old, a pediatric therapy provider moved in 2 miles from our house. Considering we live in a pretty rural area, this is quite a blessing. Otherwise, we would be driving 25 minutes to the nearest outpatient therapy office.

At Goldie's 3 year check up I asked her pediatrician for a prescription for a speech and occupational therapy evaluation. I made an appointment for the evaluations and brought the prescription with us.  After the evaluation, it was recommended that Goldie receive two sessions of speech and OT weekly, for thirty minutes each.

Speech
Initially, things got off to a slow start. with therapist B. She was there for two weeks, then left. Goldie worked with her supervisor until therapist A was hired to replace her. The supervisor was wonderful, had heard of Sara Rosenfeld-Johnson, and noted in Goldie's chart that we would like to use her techniques.
The first quality I noticed in "Ms. A" was that she has high expectations for the children she works with. I love this about her, but I've seen other parents scoff at her ideas. Some of the things she works on are: making choices, labeling, indentifying, using two words together, using sentences, and speech sounds. She also, does oral motor work, but I'll get to that later.
Goldie has begun to use a lot of words and phrases. When we talk to her she always repeats back part of what we said. I've heard a lot of new words from her doing this. Goldie can tell us "I want ___". She also understands "if/then" statements. This comes in handy for transitions and when she wants to do something and I need her to do something else. For example "If you wash your hands, then you can have a snack."

Occupational Therapy
Goldie took to her new OT, "Ms. M", right away. Ms. M also has high expectations for Goldie. I have to admit that even I was skeptical at first because of Goldie's low vision. She does much more than simply work on fine motor skills. Goldie does many activities while sitting on a swing or therapy ball to improve her core strength, balance, and eye hand coordination. They also work on dressing by having Goldie remove her shoes and put them on before she leaves.
I have seen an improvement in Goldie's arm, hand and core strength. She is also beginning to dress herself independently and can completely undress herself.

The Best Part!
Both therapists work together on oral motor activities to help Goldie with drinking, tongue and lip movements, etc. This was nearly impossible when Goldie was in the birth to three program and was not an option within her IEP. I wrote more about it here.

More Details
The office has mostly bare walls with an occasional B&W photo of children. It is very neat and clean. Goldie has little to no distractions (most days).
Goldie enjoys being there and trusts her therapists. So do I.
There has not been as much consistency as I would like. Her OT is on maternity leave and they have 2 different OT's covering for her. Then, when I was making our fall appointments the scheduling person switched Goldie to a different speech therapist. I don't know what made me ask if she made the appointments with Ms. A, but I was glad I did. I let her know it was absolutely not acceptable to shuffle my child around and the situation was rectified. It bothered me to find out that it was intentional. They were moving all of her Thursday kids to a new therapist's case load. Now I know to be on my toes when making future appointments.

Giving credit where credit is due

Goldie had her quarterly eval this week. I have to say it was fabulous! She has made so much progress in the last 3 months. She now knows over 100 signs and her speech is increasing slowly and steadily. Her fine motor skills have taken off and she is completing puzzles on her own along with beginning to draw. I could go on and on!

So, I was bragging about Goldie to a family member and their reply was "Are you going to do something in March, so she doesn't backslide, since you aren't sending her to preschool?"

Well, that caught me completely off guard. I explained, again, that our immediate family, has helped Goldie get to where she is today and we will continue to do so. And when I say we have helped Goldie, what I mean is that we give her opportunities and encouragement. Like you would with any child.

Goldie is the reason for her own success. I'm so tired of this idea that she would just be happy to sit and stare at the wall if it wasn't for Early Intervention. I remember reading books on DS when she was born that gave the very distinct impression that children with DS were not motivated to meet milestones or learn new skills on their own. Then the IFSP meeting came and the echoed those same thoughts. 2 1/2 years later I can say: what a bunch of BS!!


Here is our star! If you're wondering, she is putting cupcake picks into a pegboard to make a flower garden. Cute, huh?

"High Functioning" and why I don't like it

I've been meaning to write about this, so after reading Megan's post I thought now would be a good time.

Following Goldie's birth, we heard a lot of comments like, "maybe she just has a mild case of DS" or "maybe it won't be too bad" or "she doesn't have all the physical feature so it must not be as serious". I don't like hearing these things, but I usually assume that people mean well and I explain that DS doesn't come in varrying degrees. Every child has their own strengths and abilities.

When Goldie was around 6 or 7 months, I was really worried. Laying awake at night,crying worried. I really thought she was blind and hearing impaired. She couldn't see further than 3 feet away and she wasn't turning toward sounds. I held her all the time because I didn't want her to think she was alone. Having her pictures taken was gut wrenching because she had no idea where the person with the camera was. No amount of singing, clapping or toy waving registered any response. Her eyes would search all over the room for...something.

It was during this time that this person stopped to drop off some things she had bought for the girls. Now, I don't want to air our family's dirty laundry in public, but let me say that this an immediate family member who sees Goldie at least twice a week. She aked how Goldie's therapies were going and then she said "Well, I'm sure she'll be fine. She's high functioning. You can just tell she's high functioning."

What I heard was "I hope she's high functioning because her life will have more value and I don't know if I can love her if she's not."

I didn't know what to say, so I nodded like a bobble head while opening the door for her.

What I really wanted to say was "Are you effing kidding me? My kid can't even see you from four feet away. If you spent more than 5 minutes with her you would know all the things she can't do. I don't care if she's high functioning. I love her anyway. I have a love for her that others will never know." I know part of that sounds really negative, but I was very aware that she wasn't doing most of the things her sisters did at the same age. As Goldie's mom I've learned to walk a fine line between reality and high expecatations while always trying to stay positive and optomistic for her future.

While working on our presentation last month, my friend Sarah, sent me a link to Disability is Natural with information on people first language. Then this week she forwarded a copy of this article. I enjoyed reading this because she brings up many thoughts and feelings I've had over the last 2 years.

I'm overjoyed by the progress Goldie has made. We've been told she is still legally blind, but I'm amazed everyday by what she CAN see now! She hears everything. We even have to spell in front of her. (Don't say popcorn unless you plan on making it!) But, I still see people trying to size her up or compare her abilities to others. I've also seen the pity when they ask if she is doing something and I say no. I know they feel more sorry for Goldie or me than we will ever feel for ourselves.