Goldie Goes to Children's Hour

I've mentioned before that we are not sending Goldie to preschool this year. So, you may be wondering "What does she do?"

I decided to sign her up for a program at a local church called Children's Hour. Goldie goes once a week for 2 hours. My neighbor is her teacher and I'm the permanent helper in her class. It is an all volunteer program that one of my other children attended for two years. No one has any type of education background, let alone any special ed experience. My mom, who has worked in early childhood classrooms as long as I can remember, described it as "developmentally inappropriate." Which is why I love it!

There is no formal instruction or curriculum. No IEPs, no therapists to count how many times she gets something right. Just Goldie and 8 of her peers.
They do have free time with play-do or puzzles, opening songs, weather bear, craft, snack, gym or music, and a bible story.

I expected the first couple of months to be pretty rough. After an awful summer of "Story Time for Children of All Abilities" at the library, I set very low expectations. Sitting still while someone reads to a large group is not one of Goldie's abilities. Yet. I even second guessed my decision to sign her up for a program with only typical children and no adaptations. However, she has been doing great!

My proudest moments are when I see her at snack time, eating and DRINKING from a cup, and holding her hand as she walks down the steps. I had set a goal at the beginning of summer that she would be able to do both of these things by September. Goldie has worked so hard and I love to see the joy on her face when she has her own miniature cup of juice just like all her little friends. Sometimes, after snack is over, she'll sneak over and try to pour herself another drink.

During music, Goldie does all the hand motions that go with the songs or she and I use ASL signs. In the gym she has been able to do all of the activities with no more help than the other children need.

I've been observing how the children relate to each other. There are two boys that come together and I also bring my niece with us. I have yet to see the children really talk to each other and try to form new friendships. The boys stick together and my niece always wants to be near Goldie. Goldie is ready to be friends with anyone, especially the boys. She likes to sit by them and put her hand on their backs. One of them even seems to be looking out for her when she needs help.

The biggest challenge is craft time. The first week wasn't bad, just coloring and some tiny stickers. Then, they moved craft to a room with bins of toys. So, now she wants to ditch the hard fine motor work to go play in the toys. I keep redirecting her back to the craft table and try to give her enough help that it isn't overwhelming to her. At home she has shown a big interest in coloring. I keep a desk with paper, crayons, and markers in the kitchen for her. When they sent home a coloring page I put it on her desk. She sat down on her own and colored each flower yellow. This is the first time she has ever done anything like this! My pile of Goldie's artwork is growing.

At this point, I'm very happy with our decision and the activities we've chosen for Goldie. I think between Speech, OT, Children's Hour and our homeschool field trips, she's got plenty of learning opportunities, but she isn't over scheduled. Which is good for me too!

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).

Physical Therapy

Maybe it's the pregnancy (all ready?) but I'm beat from chasing Goldie around by the end of the day. Well, actually by lunch. I've been questioning whether she still needs PT. I know there are things she still has to do, like running and jumping. I have the book Gross Motor Skills in Children with Down Syndrome and spent some time this week looking over the checklists. Out of the 45 motor milestones there are only 9 left for us to work on. We also continue to help her build up endurance and strength.

Hank and I talked about it and we really feel that we can handle these last 9 on our own. It helps that Goldie is such a physically motivated girl. She also has 2 sisters that keep her moving, a swing set, riding toys, and the country side at her disposal. PT has been one of the easiest things for us to do as a family on a consistent basis. Just this week she mastered climbing the ladder to the slide all by herself. I'm so proud and scared all at once! At first she would only do it once. Now, she does it over and over. I love to see how strong she is getting.

Now, how do I tell the PT? She's been coming for 2 years and when we dropped from every week to 2x a month I could tell she was disappointed. My eyes got all wet just talking about it. Hank said I'm just being an emotional pregnant woman. The PT was here yesterday and I couldn't bring it up.

I've really grown to like her. We chat about our families and she is great at showing me how to help Goldie. But, yesterday she said something that's been bugging me. She asked me about Goldie's swallow study and if she was drinking any more. I told her how that was going and went on to tell her about taking Goldie swimming. Goldie has never really enjoyed swimming. She usually hangs on my neck, then I pry her off of me into a floatation device and try to keep her moving and happy. I realized this week that what she hates is the water going in her mouth (she chokes and gags). If I hold up the front of her floaty or if she holds herself up she is much happier. I think this is also why she doesn't like me rinsing her hair during her bath. Getting back on track now, I tell all this to the PT. Her response, " I don't know. Are they smart enough to make that connection? Really, are they smart enough to know what will happen when they get in a pool?" My response, absolute silence. Did she mean any 2 year old or does "they" mean kids with DS? I have a 2 yo niece and I don't think anyone would question if she could make that connection. Am I being overly sensitive?

After that conversation I'm not as sad about letting her go. While I like her, she has never set very high expectations for Goldie. She was always a little skeptical when I told her Goldie had learned something new. I had to add walking to her IFSP last year.

And since I finally got the camera back from my husband, here is a picture of Goldie smelling a flower "with her nose, not her hands."

Kindermusik

After we dropped the playgroup, we signed up for a Kindermusik Family Time class. Classes are once a week and I bring Goldie and Swatcho. Swatcho is the oldest child in class and Goldie is on the younger end. The first week we went it was raining and the parking was (is) terrible. By the time we got in the building I thought it would be our first and last class. But I was soooo wrong.

The teacher is very caring and knowledgeable. She taught my older girls when Goldie was born and the year after, so she knows all about the DS. She goes out of her way to include Goldie and praise her abilities.

The other families are also a joy to be around. I was nursing Goldie at the end of class one day when another mom came over to talk to me. She said she was still nursing her daughter who is a couple months younger than Goldie. Another mom commented on how strong Goldie's ankles were. She happens to be a PT, so we talked a little about orthotics.

During class, Goldie does her best to do what the other children are doing. If it is something she can't do yet, I will pick her up or use hand over hand assistance. I think sometimes her eyes get tired and aren't able to keep up with all the movement. (because of the nystagmus) Once in a while she gets sidetracked and I have to bring her back to the group. But, it's only an hour long, which is just right for her. My 7 year old also loves the class and looks forward to it every week.

The first week of class we received a bag with two drums, two CDs, two story books, and a lion puppet. About three weeks ago I put one of the CDs on while I was cooking dinner. I thought it would be a nice alternative to TV. When the music for the third song came on I saw Goldie tapping her foot out of the corner of my eye. When I turned to watch her the words to the song came on singing "I've got the toe tappin blues. I've got the toe tappin blues" We had been practicing this in class and she recognized the song from only the music! And this was after a two week break from class. Of course I stopped what I was doing and joined her. I learned that not only could she tap her toes, but she could slap her knees with the song. Since then, Goldie has also learned to walk backwards when we sing John Jacob Jingleheimer Schmitt and run forward on the La la la la la part. Who knew music could be PT?

IFSP (I think)

Goldie's IFSP is in the morning. Please say a prayer that I have both wisdom and composure. I was told of the IFSP date by Goldie's PT. Her service co-ordinator has yet to call me. I don't think I've seen or spoken to her since January! I do not plan to confront her about this tomorrow. I don't think it would be appropriate in front of the therapists. But, I am ticked. I should have been the first person called and then a letter is supposed to be sent out to each therapist. Last year, she didn't invite the Vision Therapist. I complained to her supervisor because my kid is legally blind and was receiving VT every week. How do you forget that?

So, this year the VT called her to find out the date of the IFSP. She won't be able to make it, but I'm ok with it because we are decreasing services in that area. At least until we see what the new eye dr. wants to do as far as surgery goes. IF she has surgery, Goldie will need VT to learn how to use her new vision.

Goldie's evals were done last month, so we won't be doing them tomorrow, but I will get the final results. I know where she stands on most of them already, so I don't expect any suprises there. Last year, everybody did all the evals at once and I wanted to cry by the time they left. Ugh.

I also spoke with the SC's supervisor last month at a meeting she happened to be at. So, I'm still suprised that she hasn't called to confirm tomorrow's meeting. I WILL be asking for a new SC after this, in writing. She is not equipped to help us through transition when Goldie turns 3. No way.

On a happy note, I told Swatcho she could make monkey bread in the morning for everyone. She has a recipe she's been dying to try.

Feet

I talked to Goldie's PT about her walk. I thought I noticed her walking more on the insides of her feet. She said she had noticed her "turning in" a little bit. I told her I'm open to suggestions. So next time we see her we are going to talk about getting Goldie something more supportive than the shoes she has now. I still have her in soft soled shoes. But I always let my kids go barefoot, so I'm not sure what we'll end up with. I still feel like there are so many little things (and big) to learn about with DS.

I know this is silly, but it bothers me. It's just another reminder that things are different. And then a family member stopped by with some "stuff" yesterday. One thing was a pair of socks for Goldie. They were marked ages 3-5 years on the bottom. I commented that Goldie has always had big feet. So, this family member starts telling me no, she doesn't. Then compares them to my niece's and goes on about how my niece is running and Goldie isn't. WTH? My niece is 2 months older than Goldie and has always worn shoes about 2 sizes smaller. And oh yeah, she doesn't have Down syndrome! Now, her cousin's feet may have caught up, but for a kids with DS, Goldie still has some good sized feet. Maybe I should invite this person next time we go to Target and let her chase Goldie around the store. he he he.

Edit: Here they are while she sleeps sideways in the recliner.

Special Needs Family

Technically speaking Goldie is the first and only member of my immediate family diagnosed with a syndrome that puts her in the special needs category. Since she was born, I've thought to myself MANY times that we all have special needs. Spending time with a variety of therapists who let me pick their brains has confirmed this.

Lets start with Hank and Swatcho. I'm convinced they both have ADHD. I'm sure its genetic because his mom and grandfather exhibit the same traits.(If you know anyone doing a study give us a call) Hank is physically unable to sit still. I have no idea how he made it through school. He says he paid people to do his homework so he could work after school. Then,there are the times he goes completely overboard. For example, he went to buy seeds for our garden last year. We only needed some pumpkin and green pepper seeds. He spent $80! WTH? I was only able to talk him into returning $40 worth. I only send him to the store as a last resort now.

Swatcho has been on the move as long as I can remember. Or not, because I don't actually remember her first steps. They were early and it was just the beginning of many trips to the ER. Broken leg 18 months, split chin 2yrs, stitches in big toe at 2 1/2yrs, and broken arm when she was 5. The arm was fun. She had to go to PT twice a week and we had therapists coming to the house for Goldie.I freak out now anytime she does anything remotely dangerous looking. Swatcho is also my sensory seeking child. She loves jumping, spinning, swinging, bike riding, etc...

So for a while I thought Mini Me was the "typical" one. But, alas, no such luck. I'll spare you all the details today, but let's just say she can't follow directions. I've tried everything. I realized it was a problem when I saw it impacting her school work. She knows the material, but can't remember the steps to complete a problem or answer a test question. One of her teachers has developed a low perception of her because of this. (thats a whole nuther post)

Hank came home today and said he thinks I should look into Executive Function Disorder. Yup, that's my girl. And she probably got it from me. But, when we were kids expectations were lower. I didn't have the amount of stuff to keep track of that she does, and I mean both toys and school work. I can also see why I have always kept our schedule so open. Too many things on the calendar and I get overwhelmed. There are weeks I think the whole therapist thing is going to put me over the edge. I'm thankful for them, but at the same time just want to be done with it already.

So there it is. Now, how do I organize our home lives so everyone's needs are met? Do I pursue a formal diasnosis for any of this or just implement strategies to help them be successful? I've started by boxing up some of Mini Me's toys and 2 bags of clothes. She had the idea that she could trade items so she doesn't have too much stuff out at once. I also do this with Goldie's toys to cut down on the mess.

Toddler Yogi

Tuesday we drove into Pittsburgh to meet with Sonia Sumar. Goldie and I were there for little over an hour, but it was an hour that will stay with me the rest of my life.

First, I have to tell you, that woman radiates love. pure love.

I brought Goldie early so she could get acclimated to her new surroundings. We were allowed to sit in the class and watch as Sonia worked with a little boy. We weren't told his diagnosis, but if I had to venture a guess I would say Cerebal Palsy. He looked to be about 5 and was one of the most articulate, intelligent children I have ever met. Sonia guided him through the yoga poses helping him relax his muscles with gentle touch, music and chanting. The two of them talked and chanted together the entire time. I was moved to tears at one point by the connection between the two of them. I tend to be a little emotional, but when I looked around I wasn't the only one with wet eyes in the room.

So, then it was Goldie's turn. This is where Goldie did her part to dispel the myth that people with Ds are happy all the time. She never had a complete crying break down, she just kept whimpering. Sonia respected this and guided me in doing some of the poses with Goldie. I learned she is capable of more than I thought. I also realize now that Yoga is about more than just poses, balance and strength. Its about being at peace with your body and who you are. Being happy in your skin. We could all use that. (I wonder if they have a class for mothers with multiple children)

Then there are the tangible benefits of yoga. Strength and balance. I really think learning the different chants would "count" as speech. I know Sonia used yoga as a form of vision therapy with her daughter. And how about just doing it for fun? I know the little boy I saw was having a good time.

The studio owner took pics for me, I'll post them after she sends them to me. Now, how to convince Hank that this is worth an hours drive plus the costs of the class?

Ohm

Yippeee! Goldie has a spot at a Yoga for the Special Child training. I'm stoked! I've been trying to find someone to work with her for over a year now. There is no one certified in our area and last years training had to be cancelled. Hopefully this go 'round will help us find someone close by to practice yoga with Goldie.

If you haven't hear of Yoga for the Special child there is a book and a website. I thought about becoming certified myself,but the certification course lasts 7 days and that just wasn't doable for our family right now. Nevermind my lack of yoga experience and cash to pay for the course.

Why yoga? Early intervention provides PT until Goldie is 3. After that services are provided through our school system. I've been looking into this and attended an informal Q&A on the transition process. Goldie will not receive individual PT, it will most likely be 15-30 minute sessions and they will be education based. We'd like Goldie to have strength, agility, and stamina. Doing yoga can help with all of these. Yoga is an activity she can enjoy for a lifetime, long after her PT eligibility has run out.

We have a family yoga dvd that I do with the girls. It is inspiring to watch her imitate the different asanas. I've also been looking at a dvd called Happy Me Yoga. But I am most impressed by Sonia Sumar and her story. Her book isn't just about yoga, it tells the story of her daughter, Roberta, who had Down Syndrome. We've started some of the activities she teaches, but are looking for some professional advice and guidance. I'll let you know how it goes!

More PT stuff

When Goldie was born her muscle tone was VERY low. It was the first thing I noticed when I touched her and I kept asking everyone about for the next 15 hours. (They all played dumb)

She started with OT at 5 weeks and then we added PT at 6 months. Her OT worked on holding her head up and sitting.





The PT and her pediatrician gently tried to prepare for the possibility that Goldie may not walk until she was 3 because of her low tone and she would not bear any weight on her legs at all. I would see moms with their babies standing on their laps and be a little green that Goldie couldn't do that. One of things that I think really helped Goldie was infant massage. I gave her a massage every single night until she turned one. Now we try to do it every other day or so. When she was 10 months old she woke up one day and she could put weight on her legs. It was the strangest thing because it wasn't gradual. Something just seemed to click for her.



That is also the month she became mobile. It wasn't a crawl or a scoot. She would sit, lean forward on her arms, and pivot her butt to the side. Hank nicknamed her Chim Chim because he said she looked like a monkey.



Then around 13 or 14 months she started crawling. But, she crawls without putting her right knee down. She uses her foot. This drives the PT batty. If Goldie is sleeping on her stomach she will even keep her right knee in the air. She also started pulling up on furniture around this time.




During the time from 8 months on, we used to "walk" her around. I would support her weight and encourage her to make stepping motions across the room. It is supposed to help with muscle memory and is the idea behind treadmill therapy.

Well, when she started cruising at 16 months she also started trying to step sideways. At 19 months Goldie took her first steps. We helped break the pattern of side stepping by supporting her as she walks up the steps. You have to move your legs forward to go up and she thinks its great. I'm usually pulling her off the steps. Another thing this has helped with is strengthening her left leg. When she began walking she would always lead with her right leg and the left would catch up, but never pass the right. I don't notice her doing this as much.



Now, at 21 months she is able to stand up on her own and stay standing. Her PT said some kids are so motivated to walk that they don't bother learning to stand until later. She is also stooping down to pick up toys while keeping her balance.

I do worry about her left leg being weaker than her right. I notice it in her left arm and in her left field of vision, too. (Vision is a post for another day) I wonder if this will go away or if her right side will always be dominant.