Wednesday, September 29, 2010

Sunday, September 26, 2010

Good Deals on Talk Tools and more!

I tend to fluctuate between wanting to give Goldie every opportunity to succeed and feeling like I'm just throwing money at her disability. My other kids had a shape sorter, Goldie had 3. Ditto for stacking toys, puzzles, and pegboards. Don't even ask how many board books I've bought for our low vision toddler.

So, I'm always on the lookout for a way to save some money. This month has brought a couple good deals our way.

Let's start with two that I found over at Got Down Syndrome's blog.

First, the book Down Syndrome: What You Can Do is available for 10% off. Offer is good until Sept 30, 2010.
The next one from Talk Tools is also good through Sept. 30th.
"Our MOST popular promotion is back!

RECEIVE 40% OFF ALL EDUCATIONAL DVD's!!! --  Prices as low as $39.00!

**Our Self-study DVDs are among the most accessible and convenient means to acquire continuing education units (CEUs), and upon completion ITI will make sure the required documents are filed on time and correctly with either ASHA or AOTA. Additionally, the presence of full-length one to two day workshops in your multimedia library will allow you and your colleagues to review the material whenever, and at whatever pace, you like**
Visit TalkTools website at I ordered some things and have been sharing them with Goldie's therapists.

The third deal available right now is from Woodbine House. In recognition of National Down Syndrome Awareness month they are taking 20% off of books and DVDs on Down syndrome. Just go to their website and click on "specials" to see the items included in the sale. This offer is good during September and October. I'm thinking I'd let to get "Views from Our Shoes" for my girls.

Last, but not least, is my newest place to shop on the web. Since Hank hates shopping and Goldie isn't much better I'm usually rushing through the store trying to get out as fast as possible. I always forget something. This is why I love shopping online. Some of Goldie's supplements I can only get online. I have had to order from 3 different places to get everything we need. Now, I found a store that sells both the ginkgo and fish oil Goldie takes. Take 20% off your first order at with promo code WIFF2267 . Don't forget the free shipping on orders over $25! is  the sister site to, so I can even add replacement straws for Goldie's cups or diapers for Hank to our order.

Tuesday, September 7, 2010

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.

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.

Friday, September 3, 2010

Comparing Therapy Service Providers - Part 1

Occasionally, as I'm reading other blogs, I run across the question of weather private therapy is "worth it". So, I thought I would write a post (or 2 or3) on our experience with both public and private agencies. I'll have to start way back in March, when Goldie turned 3.

State of PA Early Intervention

During the IEP process, one of our options for Golden was to place her in a classroom where she would receive speech, OT, PT, and a vision teacher on a consultant basis.  This means that she would never be entitled to individual or pull-out sessions. I was told that the therapists sometimes worked one on one, but it was discouraged. In this model of service delivery the therapists simply consult with the teacher about how to meet the child's needs in the classroom. I  inquired specifically about how they would  incorporate oral motor therapy this way and was told it would be done as a group activity. Choosing this option would give a child the maximum amount of classroom time, which can be great if they have minimal delays or a really great teaching staff.

The second option, and the one we chose, was to refuse a classroom placement for Goldie and receive services on an itinerant basis. We live in Pennsylvania where the law mandates that each area of delay must be addressed in the IEP. This meant that while we only wanted speech and occupational therapy for Golden, we had to have speech, OT, PT , and a vision teacher. They did not force us to have a special education teacher because we are homeschooling and I will be doing the teaching. Her IEP was written to have me bring her to the classroom for speech and OT weekly. PT would be provided every other month at our home, except in the summer. The vision teacher would consult with me on a monthly basis.

How it played out:
I never heard from the PT in the six months following the IEP meeting.
The vision teacher was nice to consult with on goals for Goldie, but was unable to provide us with any new activities or strategies.  She made some nice charts for me to keep track of Goldie's progress.
The speech therapist and the OT had very tight schedules. They could only see us at lunch time when the classrooms were empty (mostly). This was Goldie's normal nap time. Most of the time she was asleep when we got there and I had to wake her up.

Initially, Goldie didn't like the speech therapist so I sat in the classroom with them. This showed Goldie that the ST was someone I knew and trusted. We continued this for about a month. The last session was just Goldie and the ST. She was very impressed that Goldie could follow the simplest verbal instructions. For oral motor therapy she used a work sheet with a face on it and circles at the bottom. Every time Goldie stuck her tongue out (not up or anywhere specific, just out) she could put a paint dot on a circle.

Moving along to OT, he scored big points with Goldie simply because he was a man. (What can I say, her Daddy works long hours?) He worked with Goldie on a variety of fine motor tasks such as pre-scissor skills and using two hands when working on a task.

Other noteworthy items: Goldie's biggest struggle, drinking, was not addressed by anyone because we refused to put her in a classroom. Drinking could only be addressed if she was there for snack time.
 The classrooms where Goldie received services devoted a large portion of space to adult work areas. Each of them had at least 4 adult work areas and the clutter that comes with them. The walls were covered with "stuff" for both the children and adults. Every vision evaluation Golden has had recommends that she needs things to be kept simple and uncluttered.
There was one speech session were Golden was unable to attend to the ST because of an adult the room who was being loud and distracting.

I don't think this is shaping up to be as "objective" as I wanted it to. But, by the time Goldie's therapies started I had been jerked around a bit by the supposed Service Coordinator and was wondering if I would ever meet someone who could see Golden and not her disability.

I'll leave you with a picture of Goldie on our field trip to the Carnegie Science Center.  It is only $1 per person for families of a child with a yellow ACCESS card (Medicaid).

Thursday, September 2, 2010

Helping Goldie Conquer Drinking

Normally, when I write about Goldie's drinking, it's a post brought on by frustration and fear. So much has changed since April when I wrote this. I made another appointment with the ENT. He recommended speech therapy. At that point she had been seen by 5 different speech therapists and 4 occupational therapists. (And had been receiving both on a weekly basis for years) We discussed doing another swallow study and even using a scope to see what was going on. I went home and talked to yet another ST about the value of these tests for Goldie. My husband and I decided we would try one last thing before subjecting Goldie to more tests.

Goldie had started private speech and OT in April, so by the beginning of June she was feeling very at home with them. I explained to them that Goldie's #1 problem was drinking and getting enough fluids.  The very next week they began co-treating for 15 minutes each week. Then the following 15 minutes the OT continued working with Goldie on drinking and other oral motor exercises. 

Goldie's progress has been nothing short of astounding!  Within two weeks we no longer had to thicken anything she drank. They immediately identified which straw cup (of the many we own) worked best for Goldie. After 4 weeks I could put water in her cup. This is huge because she always choked on plain water. Now she is able to drink from a small open cup at mealtimes and can have juice boxes/pouches when we are at picnics. It was so nice to take the kids to the park and just throw a Capri Sun in the bag for each of them. I love the way she holds on to the top of the pouch and sips from the straw. Very cute!

Now, we just have to work on her brother's food "issues". He has a gag reflex that just won't quit and a very sensitive system.