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.

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).

IEP Evaluations

I thought I should take a brake from my babymoon for a quick update. The last 4 weeks have been fabulous. Hank is such a sweet and, dare I say, easy baby. My husband and I both agree that everything has just been way too easy this time around. For example, baby Hank was nursing within 30 minutes of his birth. He knew exactly what to do. And when to do it. No pumping, no finger feeder, no syringes. My first two were also very sleepy babies and I had a hard time keeping them awake to eat. Not this guy. The best part is that we know to appreciate all these little things. Part of me keeps waiting for his therapists to walk through the door. I keep reminding myself that our new arrival didn't come with an IFSP. Ha!

Speeking of Early Intervention Goldie's evals for her IEP are today. My husband was supposed to be home, but he has a new schedule and has to work. So, Grandma is watching the big girls while I take Goldie and Hank. And to make it even more fun, our appointment is the same as Goldie's naptime. She's asleep right now and she refused to eat lunch. This is the problem with scheduling things so far in advance.

I tried to get out of it by canceling last week. Let me explain why, Hank Sr. and I have been talking for the last couple months about what we want for Goldie next year. This included observing an inclusion preschool classroom. I was less than impressed. After discussing our various options, we have decided not to send Goldie to preschool next year. Originally, we were told that if we waited until September to send her that they would not provide her services and we would have to get them privately. Soooo, I thought if we weren't sending her to pre-k she wouldn't get services from the county. But, I got a phone call yesterday saying they would still provide. Funny how things change. When I gave my husband the new information he said "It feels like were dealing on a new car."

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?

Transition - The First Meeting

This week was the first meeting in Goldie's transition from home based to school based Early Intervention services. I still remember the very first IFSP meeting. I think she was only 5 weeks old. There was a woman named Brenda asking me what my goals for Goldie were during the first year. Who ever thought I would be coming up with goals for our new baby? All I wanted to do was feed her and take a nap. Somehow, thought started forming about what I wanted her immediate future to look like. I went back through 8 years of being a mom and watching my other babies grow and decided that is what we would aim for. One thing I specifically remember telling them was I wanted Goldie to eat real food. Not baby food, just like my other kids did. Brenda looked up at me to see if I was serious. Then she said " Well, we'll have to make sure she can do it safely." Goldie did accomplish this goal. I had to compromise a little along the way, but not much. The lesson I learned is that you can't be afraid to aim high. If I had been wrong it would have been ok. We would have given Goldie the support she needed and adjusted our expectations. But, we should always give her the chance to succeed.

Now that I've gotten way off track from my original topic... I admit I've been pretty worried about how this transition will go. You just get used to dealing with one system and now its time to move on to another. I've also never liked the idea that my daughter is part of "the system". I've always enjoyed my parental autonomy and really resent anything that infringes on it. I was laying in bed thinking about how I could be at peace with this process when I realized the obvious. Hank and I are still her parents, we are still in charge. We have the final say in what services our daughter receives. If we don't like what Early Intervention has to offer, we have choices. We can even choose to take her to private therapists and pay for prek ourselves. We are not at the mercy of the system.

I woke up in a great mood the day of the meeting. I made a list of all Goldie's strengths and the things she is still learning to do. (Good thing, because I was asked for these) I also wrote down some questions. Hank was watching the girls, so I went alone. This is fine because he tends to be too nice to people. He's great at compromise and I'm great at sticking to my guns! The meeting consisted of myself, Goldie's current SC, and a man whose title was Early Intervention Service Coordinator. I guess he's going to be the new SC.

It went about as I expected and he wasn't able to answer all my questions. I give him props for admitting that and not just giving me bad information. He asked what we had in mind for Goldie. I told him, "We decided that the Fall after she turns 3 would like to enroll her in a typical preschool setting." That was followed by him trying to convince me to enroll her in the special ed pre-k in March. I simply repeated "We won't be sending her anywhere until the Fall after she turns 3." He realized rather quickly I wouldn't be changing my mind. I did explain our reasoning (new baby), but he just raised his eyebrows and went back to writing. Whatever. I guess he took it personally.

Next came the question of how will Goldie receive services if she is not in pre-k or daycare. He didn't know and told me to ask at her eval in January. Wrote that ? down. I also have to ask how they will implement her oral motor therapy in the classroom.

Then we talked about typical pre-k options. Not far from us is a typical preschool that has slots for students with IEPs and has staff from EI in the classroom in addition to their own teachers. I had already heard about this option and we are very interested in this for Goldie. My big question is how do I make sure she gets one of those slots? I was told "We just put her in there" Yeah, right. I don't believe that for a second.

Finally, came the paperwork. I was asked to sign a paper allowing them to bill Medicaid for Goldie's services. I asked if this would cause a problem if we pursued private therapy. He said "no, well it shouldn't, unless their billed on the same day for multiple services." I said I would bring that form back later. I could have signed "No" and her services would still be free, but I wanted more time to think about it.

Overall, I wasn't impressed. I had some big safety issues with the building. Goldie could have easily walked out the front door. (I know people who work there that have found kids wandering the building) There was no interest in Goldie as a member of our family. There was a brief explanation of why inclusion is a great idea, but segregation (my word, not his) of children with special needs is sometimes necessary. Then it was my turn to make faces.

The best part of the day though - while I was gone Hank decided to play outside with the chainsaw so the girls were on Goldie duty. They got her to sleep for a nap, fed her a snack, and took her to the potty. Where she did number 1 & 2! (Now that's a whole post for later.)