Vacation or Therapy?

I always worry when Hailey has a break in therapy or a change in our schedule.  I don't know why, but I'm always worried she will regress or not progress in areas.  Vacation was fun for all of us, but by just having fun and being with family Hailey had LOADS of therapy!

Last year we had issues with Hailey having sensory issues at Disney.  She didn't like the shows when the rooms would get dark.  She didn't like loud music.  This year, she watched the shows, danced and threw her hands in the air and she giggled.

Hailey LOVES music.  No matter where she is, if she hears music, she has to move.  Disney was no different (there is a LOT of music).   Here are two examples, one in a stroller and one on the loose.  The night one (it was about 10 p.m.), she couldn't decide if she wanted to dance or run, so she did both :-)

Hailey did a LOT of walking at Disney...on different surfaces:  grass, sand, in the water, up inclines, down inclines and up stairs.  She followed big cousins, she followed little cousins.  She is almost running.  She has the fastest walk of any little kids I've ever seen (especially if she thinks she has something she's not supposed to have or if she thinks you are chasing her).  The "run" is accompanied with the funniest giggle you have ever heard!


I was amazed at how verbal Hailey was at Disney.  She imitated sounds and tried to say more words than ever.  I don't know if it was all the extra people, the excitement of being somewhere else.  Who knows and I don't care...it was awesome!!!  She has continued that at home and has been increasing both verbal and signed vocabulary.  Her communication followed suit.  She started requesting more items and did much better at getting her point across...both positively and negatively.  I think all of us got a few doses of her "no, no, no".  She found out quickly that signing "cookie please" to her aunt would lead her straight to a cookie display where she requested the same from the cashier.  She also learned how to be sneaky.  When the cookie was given to Hailey before dinner, she quickly shoved all of it into her mouth as mom approached.  Such a character!!!

Cookie?  What cookie?

Hailey wanted to spend a lot of time with Aunt Staci that week....I wonder how many cookies she ate :-)

She also signed with strangers.  One morning she started signing cookie to the woman sitting beside her on the bus to a park.  The woman asked Hailey why she was asking for a cookie so early in the morning.  My sister-in-law was surprised that the woman knew what Hailey was signing.  The woman chatted with Hailey and asked her aunt questions.  As we were getting off of the bus, she told me that she was a special education teacher for children ages 3-6.  She was impressed with Hailey's social, verbal and signing skills.  As I said yesterday, she added signs too.  She came up with new signs for 8 family members and kept using all her old signs.

Vacation turned out to be a huge boost of speech therapy mixed in with bursts of physical therapy.  I do think, however, we were all tired by the end of the week with "What's that" and "Who's that"?  She insisted on high-fiving and waving to as many as she could.  There are a lot of strangers at Disney and apparently, our social butterfly thought she needed to meet them all!

Can't wait to see how she reacts when we go back!!!

Evaluations, Therapy & the Down syndrome clinic

Before we had Hailey, I had visited Cincinnati Children's Hospital once.  I had heard many great things about the facility since had moved to Ohio 13 years ago.  I visited a dear friend's son there a couple of years ago.  However, in the last two years, we have visited this hospital or a subsidiary of it more times than I can count.  I remember driving there in the wee hours of the morning the day of Hailey's open heart surgery.  The streets were fairly empty.  Rush hour doesn't start at 5:30 a.m.  I looked at my husband to say something.  Before the words were out of my mouth, he said, "I never wanted to know this place like the back of my hand, but we certainly do."  How did he know what I was going to say.  We were sad about that fact.  75 hours later, that mood had changed.  Our little girl was "heart healthy" for the first time in her life.  Heart failure and death were no longer looming over our head.  We don't go as frequently for Hailey's heart, eyes, or hearing, but we are there often for other appointments.  Hailey sees her private therapists through the Thomas Center (the Down syndrome clinic).  I loathe the drive downtown every time.  I hate the traffic, but I love her therapists so much that I can't switch.  I spoken before about how your therapists become part of your village.  You trust them, you rely on them.  Your child develops a relationship with them.  Everyone has to click.  We clicked and I don't want to mess with that dynamic.  You've heard the phrase, "If it's not broke, don't fix it."  Hailey responds well and is progressing so we aren't messing with it.

Hailey ready to rock her appointment!

Originally, Hailey was scheduled to meet at the Thomas Center every 6 months.  Unfortunately, the way the appointment is billed and how my insurance pays, the appointment is quite pricey.  We see the same therapists privately that would evaluate her during the appointment so we only go once a year.  The purpose of the appointment is to get an overall check of how Hailey is doing in all aspects:  medically, socially, gross motor, fine motor, speech, nutrition, etc.  I know that people have different opinions of the appointment and the overall appointment can be quite overwhelming for some parents and some of the children.  Generally, the appointment will consist of vitals taken of your child and a quick question and answer.  Similar to what you expect from a well-check with your pediatrician.  In a group setting, you will meet with a developmental pediatrician, speech therapist, occupational therapist, physical therapist, nutritionist, social worker and a nurse.  This latest appointment of Hailey's (3 weeks ago), the physical therapist was out so the OT took over her evaluation.  In addition to all the others, we had a resident attend the appointment.  Hailey wasn't as friendly and cooperative with him as the others.

We were early for our appointment and surprisingly we were called back right away.  The nurse weighed Hailey, checked her length and measured her head.  She then took us into a room for questions. 

I'm sure I can help the nurse with this paperwork!

She asked us to wait there for a few minutes until the group was ready for us.  About 10 minutes passed and the nurse returned.  She said they were tied up in another evaluation and the child was not cooperating so Hailey and I would need to wait awhile longer.  The room we were in was small and extremely warm.  She brought Hailey a few toys to occupy her. 

Hmmm...the nurse is gone, I'm sure she won't mind if I rearrange her desk!

About 15 minutes later, the team arrived.  I think the room was a little small for all of us, but maybe it was just me.  I was extremely worried that Hailey wouldn't cooperate with the evaluation because of our long wait time.  I was partly right.  There were parts that Hailey 100% knows how to do, but refused.  Instead she would smile, stand up and walk away.  Fortunately, the speech therapist is one who knows Hailey so she "knows" what Hailey can and cannot do.  She has seen it and heard it.  My child was quite the stinker.  One part was a giant flashcard with several black images on it.  The speech therapist asked her what do you ride on.  Instead of pointing to the bike (the correct answer), Hailey signed "car" and made car noises.  Smart little cookie.  Hailey refused to stack blocks, but fortunately, I took a picture of her stacking while we were waiting.  I think I almost choked when the OT pulled out a handful of coins and a regular piggy bank.  We've never tried that at home.  I'm not purposely giving Hailey a choking hazard.  I thought for sure she wouldn't get them, but that little girl rocked it.  She put them all in the bank.  I was impressed with that one. 

The nurse let Hailey play with this light up toy...she was mesmerized by it!

At the beginning of the appointment, Dr. O asked how long Hailey had been walking.  I replied that she had been walking a couple of weeks before her 2nd birthday.  Dr. O continued asking me questions while observing Hailey with the therapists.  About 20 minutes later, Dr. O looked at me with a little of a shocked look on her face.  She said, "She just turned two."  It was a combination of revelation and question.  I nodded.  She followed with, "She is doing extremely well."  My mom heart expanded.  Sometimes with all the guilt mom's hold, it is nice to hear you are doing okay. 

After everyone evaluated, the group left the office to confer with one another.  A few minutes later, they came back in with their recommendations and results.  I never did ask where Hailey fell with gross motor.  To be honest, it isn't high on my radar anymore.  Hailey is walking.  We have her walking as much as we can when we are out and about.  Some days it is nearly impossible to have her walk places because we are on time constraints.  She is a "looker".  She wants to explore everything and speak to everyone.  Eventually we need to work on jumping, running, skipping, etc, but right now we need to build up those muscles by walking more and playing outside.  The OT said she is right on track for fine motor skills.  We need to keep working on it.  Play with sidewalk chalk this summer.  Keep working with crayons and pencils.  She doesn't recommend private therapy at this point.  The speech therapist said with receptive language, Hailey is at age level.  Proving that even though my little girl doesn't speak much, she knows what is going on.  She understands.  With expressive language, Hailey tested at 18 months.  Unfortunately, the testing model they use does not count sign language.  If they counted the 50+ words she signs, she would be at age level there, too. 

I left the appointment with several recommendations from each professional in the appointment.  We have no medical concerns at this point so Dr. O said we could come back in 2 years if we would like.  More than likely, we will come back next year, right as Hailey is transitioning into preschool.  At that point, we will probably pick up OT and alternate appointments with them and PT in addition to our speech therapy.  We are also considering having Hailey's sleep study done next year at 3.  She doesn't show huge signs of having apnea, but for some reason I'm paranoid about it.

Hailey likes to stay busy while waiting!

This week we received the written follow-up for Hailey's appointment.  They are all very good about writing the summary treating Hailey as a person and not a number.  She was described as "a delightful little girl who is doing extremely well.", "engages beautifully in a social environment", "beautiful little girl" and "engaging".  I generally loathe the follow-up summary because it depresses me.  This one was good with the exception of one part.  According to the nutritionist, Hailey's weight increased too much from 1 year to 2 years.  Dr. O didn't seem too concerned with it because Hailey has just started walking and we just recently switched from whole milk to 1%.  We watch portion sizes because Hailey doesn't seem to have the "I'm full" trigger or she hasn't learned to listen to it.  We'll keep an eye on it, but most of my kids thinned down once they started walking.

I'm glad that we have a wonderful Down syndrome association in the area and we have the Down syndrome clinic at Children's.  I hope they are a wonderful resource for others as well.

Therapists...Love 'Em or Hate 'Em

That might be a little bit of an overly dramatic title!  This is not a debate over whether or not to participate in therapy.  There are lots of opinions and different strategies work with different children.  There is definitely not a cookie cutter solution for everyone.

Yesterday driving home from Hailey's PT/Speech session, I was battling conflicting emotions.  Our PT cancelled our next couple of visits.  With Hailey walking now, she wants Hailey to spend her time practicing walking, building endurance, and strengthening her legs by walking up the stairs.  This can all be accomplished at home.  Since our insurance only pays for x number of therapy visits a year, she doesn't want to "waste" them now.  She would rather take a few breaks and let Hailey's stamina and endurance increase.  Later we can focus on other gross motor items...kicking, standing on one leg, running, hopping.  It made me sad.  I love Hailey's PT.  She is fabulous.

I started thinking about our therapists.  I truly believe it is not an easy task to find a team that you as a parent like and a team that works well with your child.  It takes the right combination of personalities.  It is imperative that you trust and respect your therapists.  You need to be on the same page as far as how much you are going to push your child, how often do you want to meet, etc.  Not every therapist is a good fit for your child or your family.  If you are only comfortable with therapy once every other week, you would not be a good fit with a therapist team that wants to meet twice a week.  Some therapists may be too soft or too stern for your taste.  Other therapist may recommend new, cutting edge therapy tools that may be too pricey for your budget.  Some only focus on exercises and skills that use items that are only accessible to you at the therapy center.  Other therapists are good at showing you things that you can do at home or use inexpensive items that are readily available.

We regularly see our EI therapist, a physical therapist and speech therapist.  We occasionally see an occupational therapist (this may increase next month after Hailey's evaluation at the Down syndrome clinic).  Yes, most of Hailey's therapists are privately paid for by our insurance and us.  We are paying them for a service, but we need to have a close working relationship in order for Hailey to be successful.  Eventhough they are paid, they become part of your child's village.  Hailey's team truly cares for her and her success.  Our EI therapist is in our home almost once a week.  She has seen me at my worst.  Struggling with Hailey's Ds diagnosis....her heart defect diagnosis...awaiting open heart surgery...missed milestones, etc.  She has celebrated with us...not only Hailey's accomplishments but also my sons.  The boys are here for a lot of her therapy appointments so our therapist has gotten to know them also.

So yesterday when Hailey's PT said that Hailey was doing fabulous and she wanted to skip a couple appointments, I was actually sad.  I love her therapists.  I love seeing them.  Sometimes, I need them as much as Hailey.  I need a professional person who deals with Down syndrome, telling me that I am doing a good job.  That my daughter is making gains.  That we are on the right track.  That reassurance is nice to hear.   On a bad day, it is the one thing that keeps me going.  I know that we will still see them later (and are fabulous about corresponding through email) but I know soon we will begin transitioning for preschool.  I will probably cry when we start preschool and no longer see our EI therapist.  Hailey will move onto preschool and receive her services at school.

We are fortunate.  We clicked instantly with our first set of therapists.  We didn't have to shop around for a good fit.  I know some families are not as lucky.  If you don't feel comfortable with your therapists, keep searching.  If you don't feel you can speak your opinion or you don't feel they are on the same page as you, keep searching.  The right team is out there!!!  I'm not sure how we got so lucky, but I'm so happy we did!  Thank you Jen, Abby & L!


These are old pics from my October post about therapy.  They are Hailey's PT/Speech team.  They are also the therapists that help with her evaluation at the Down syndrome clinic.

Here are a couple of Hailey's therapists that are not paid, but they frequently get overlooked when I talk about therapies.

31 for 21: Physical & Speech Therapy

Lots of typical children have physical therapy...some children are born with low tone or need some tweaking to meet certain goals.  Lot of typical children attend speech therapy.  My sons' preschool even screened for speech issues.  Not all children need both.  Unfortunately, most children with Down syndrome need physical therapy, speech therapy and occupational therapy while they are younger.  Hailey receives therapy through the county EI services (Help Me Grow in Ohio), but right now we are also in a rotation of private therapy.  We are on our current program through the end of the year and then we are planning on a 6-8 week break.

Many insurance companies will not pay for two therapies in one day.  This adds an additional appointment to a family's schedule.  We are very fortunate, our insurance will allow us to schedule physical therapy and speech therapy in the same day (actually at the same time).  I was very skeptical of this therapy model at first.  I didn't understand how Hailey could effectively receive both therapies together.  It actually seemed to abstract until I attended my first session.  After that, I was sold.  I look forward to Hailey's sessions (I dislike the drive downtown, but I love the sessions!).

I'm winding down to the end of October and honestly have been running out of topics so I thought it would be a good idea to show you what Hailey's therapy sessions look like.  Hailey was a tad obstinate at her last session.  She has been out of sorts with a cold and would only work when she decided it was time, but here is a brief glimpse into a combo therapy session (Fortunately Jen & Abbey agreed to letting me take their picture!).

Hailey & Jen singing the end of the word song...Hailey was refusing to speak at this point.

Singing Itsy Bitsy Spider...Hailey was warming up a little.

Hailey making Jen point to the animals

Hailey working her core on the ball while saying alphabet sounds.

Hailey deciding that she wants to hold the book and that she needs to stand instead.

Squatting to pick up an apple and then matching it on the paper.

Wall squats

Pointing at animals in a book while Abbey makes her do wall squats

Hailey really HATES wall squats!

Once again...Hailey decided that she needs the book

Hailey working on sounds and sharing them with her best friend :-)

Using the k-walker and flashcards

She's done with walking and tries to make a break for it!

I am truly grateful for Hailey's therapy team.  I know they are getting paid for the work they do, but I am positive of how much they care for their clients.  They want the absolute best for Hailey and want her to succeed as much as her family does!

You can read more about and from Hailey's speech therapist at her blog here.

31 for 21: What Does Therapy Look Like

About a year ago, I had a friend give me grief about Hailey's therapy (we started therapy at 6 weeks old).  He said that I should just let her play and be a little girl.  I think the term "therapy" can be misleading to some people.  Most of us think of therapy when someone has been injured and they are trying to regain the muscle or movement that they once had.

With Hailey, we are working with her physical therapist to build more muscle, more coordination to get her walking, running, jumping.  We work with her speech therapist to get her speaking, saying sounds, signing, communicating.  Her occupational therapist we work more with fine motor skills.

No, Hailey isn't doing 100 squats to work on her upper leg strength.  We have her work on repetitive motion, but she thinks she is playing.  I have her stand at a small table and throw her ball on the floor.  She will squat down, pick it up and hand it to me.  I will hold the edge of a hula hoop and have her hold the other side.  I will walk backwards while she walks towards me.  We read books while she is kneeling (this way she doesn't pay attention to the kneeling).  In the evening, I will have her crawl up the steps for her bath.  Trust me...the stairs are not work for her.  She is positive she is doing something forbidden!

I think there are a lot of misconceptions with speech therapy.  Yes, a big part of it is speaking and that is our ultimate goal.  There is so much more to speech therapy.  Communication is crucial...that truly is more important than almost anything.  Her speech therapist works with her on drinking from a straw.  We also go through an alphabet and make the sounds of all the letters.  We work with concepts...top, bottom, over, under.  We have introduced flashcards and work on identification of common items.  We are continuing to encourage sign language and introducing new words.   Books are an excellent source of new words.  We read books and point to objects we know.

We are on a break with occupational therapy, but that is a lot of fine motor skills.  The pincher grasp for eating.  Picking up the coins for her pig bank and putting them in the slot.  Using utensils for eating.  Holding crayons to write one day.  Pointing.  Manipulating toys in a shape sorter.

We don't schedule "exercise" time every day.  We basically just "play" with Hailey.  She doesn't realize she is working on specific exercises or skill set.  In the end, it makes us all happy!

Here are a few examples....

We work with baby dolls.  We feed them bottles, we rock them, we pat them on the back and we put them to sleep.

We read books.  We point to pictures, animals, shapes and colors.

We take Hailey to situations where she doesn't like crawling on all 4s.  This makes her bear crawl which uses different muscles and eventually will help her stand up using her muscle strength.

 Here Hailey wasn't allowed to have her ball unless she pulled herself into a standing position and took steps toward her therapist.  Hailey was then allowed the ball and threw it to her big brother.  We played catch until she fell and then started the process all over again.  I think this day she stood up, took steps and tossed the ball about 25-30 times.  She worked hard and didn't realize it.  She laughed through most of it.

Here she is walking around the table without leaning on it strengthening her core (not using her stomach as an extra limb).  

Practicing walking on different surfaces and working on stamina.

Working on her core...not using anything for support.  Yes, she is kissing herself!

Working on putting the coins into the piggy bank.  Yes, we could have completed this task sitting on the floor but we needed more challenge.  She is standing at the table.  I scattered the coins around the table so she had to walk around it to pick them up and return them to the pig.

Yes, she is clapping for herself.

 In short, therapy is exercising.  Exercising her muscles, large and small, and exercising her brain.  Isn't that what we all do to stay in good shape for a better future?