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.

Evaluations - Only a Snapshot

I always say that having Hailey challenges me in ways nothing else has.  I know, some of you are thinking that is a given.  Not in the ways you think.  I'm a chatty person and know few strangers, but for the most part am very much a wallflower.  I prefer to blend in the background and fly under the radar.  As I've said before, that doesn't happen with Hailey.  She loves to be the center of attention.  She wants everyone to notice her and everyone to acknowledge her. 

I am very OCD, type A person.  I like to have control.  I would rather do something myself and do it the way I want it done, when I want it done than ask someone else to do it and not do it the "right" way.  I guess I should apologize to my children.  It might be hard to be one of my children.  I've gotten better over the years with the boys.  Beds don't have to be perfect, the bathroom doesn't have to be spotless when the boys clean it...you get the picture.  I have come to realize that my children are not "miniature adults"...they will learn to do it my way correctly in time :-)

With Hailey, there are so many things that make me anxious and that I have learned to give up control.  If I could will that little girl into things, she would be ahead of her brothers.  Not really, but you get the point.  I've learned to work with the way Hailey learns and the time that it takes her to learn things.  Yes, there are points of frustration, but I know it is out of my hands.  Just as I can't "make" Brayden and Ian score perfectly on everything at school.  One thing I'm not sure I can ever be comfortable with is sitting through Hailey's evaluations.  I know the boys have taken standardized tests and we've seen the results.  Those are different.  It is very difficult to sit and watch a group of people present Hailey with a task.  You want to do it for her.  You want to coach her.  You can't.  You sit there and watch your child "fail" in the eyes of the facilitator.  She did it to the best of her ability and I know that is what is important and for us to work on that activity.  It is just so hard to sit there and do nothing. 

I think part of it is that as parents we feel it is a direct reflection on us and on our parenting.  That we have failed our child.  Some of it was my fault.  Does Hailey use utensils to eat?  Yes, sometimes.  We have 3 children.  Two of them have sports, religion classes and music lessons that fall after school....after dinner.  As much as I want to give Hailey free reign to make the largest mess possible while learning to master her utensils, I don't have the time every night to give Hailey a full bath before we head out the door.  Is Hailey drinking out of a straw cup, open cup or sippy cup?  Sometimes, I answered.  The OT rattled off a dozen cups to try.  I looked at my developmental therapist and laughed.  She followed with, "They own every brand and type of cup made."  It is a battle that we are taking baby steps on.  So, again....it is my fault.  I choose my battles daily with all three children.  Some days I have more energy to push her cups and other days pushing her to walk and climb are enough, can't I just let her have her bottle.  It makes her happy.  Some of the things Hailey was tested on, she simply has not mastered yet not matter how hard she tried.

It is difficult to have people evaluate your child and categorize them.  For them to tell you what age your child "performed" when you know it isn't her current age.  I know some who do not have a child with a learning disability, this won't make sense.  I should already know that she is delayed, right?   It doesn't soften the blow.

 While I dreaded today's evaluation and had a difficult time watching Hailey perform/not perform, I'm not dwelling as I have in the past.  Those evaluations are just a snapshot into who Hailey is.  They don't record how receptive and social Hailey was with a new OT in the room.  It doesn't evaluate Hailey's curiosity and persistence.  It doesn't show how far Hailey has come or how hard she works.  It doesn't answer "who" Hailey is.  Only those who know and love Hailey, can answer that. 

The parts of Hailey that the evaluation doesn't show....

Sneaking brothers' food when he isn't looking

This really shows nothing, but we were laughing at her lack of fashion that night.

Searching the ads for good sales

Getting a "few" diapers for a diaper change

Playing the drums to go along with the music she was listening to

Dancing

Giving me her opinion when I asked her to do something

Love that smile! 

Hailey is always the first to volunteer to help unload the dishwasher.

Taking her baby and Minnie for a walk about the house.

Yes, I really need to get her off that bottle....

Finally a picture of her beautiful face without it being all scrunched up!!!

One of My Dreams

Between traveling "back home" over the weekend, trying to start planning for Hailey's birthday party, the weather being ABSOLUTELY gorgeous, therapy and audiology this week...this momma is almost whipped.  I have so many blog posts that I want to do swirling in my head...like a family trying to raise money to visit their beautiful little girl to bring her to her forever home and the wonderful community that rallies around them (see Hailey's friend Ellie's birthday wish here), how excited we are for Hailey's birthday celebration because it is soooo much more than just a 1st birthday for Hailey, Hailey's current therapy and progress, and her audiology appointment this week.  All of them have to wait...for now....I will catch up with all of them over the next few days.

I have to share something with you.  I remember back in March of last year.  I was sitting in the middle of my living room floor with a team of professionals about Hailey's EI (early intervention).  They were explaining all the lingo and processes that were so foreign to me (which I now speak fluently).  We were writing out Hailey's IFSP (Individualized Family Service Plan).  It is our goal...what we are working to achieve.  I remember looking down at my tiny, baby girl.  I remember thinking...how high do I set this goal?  What is truly important to us?  I finally said with a shaken voice and tears in my eyes, "I want her to play with her brothers.  I want her to participate in our family."  At that very moment, I'm not even sure I believed it would happen...remember, I knew absolutely zero about Down syndrome.

OK...the point of my story.  Last night I was cleaning the kitchen when I hear squealing and laughing coming from the family room.  The sight brought a smile to my face and tears once again to my eyes.  These weren't sad tears...not disappointed tears...not scared tears...not worried tears.  These tears were those of absolute, pure joy...pride.  My heart was full.  The boys were playing on the floor while their baby sister tackled them.  She was crawling all over them laughing and kissing them every chance she could.  She was laughing at them and yelling.  They were yelling at her and laughing.  I received my wish...my very simple dream.  At the time, I didn't realize how big it was....last night I did.

Forgive my daughter's attire...it was close to bedtime and she was in the process of getting her pjs on.

Thank goodness the girl doesn't have teeth!!!

Maybe I should just sit on him

What???...I'm not doing anything!

Mommy Forgetfulness...

 I find it amazing that I have now had three children...they all go through the same phases/stages but yet, I'm still surprised when Hailey enters a new stage and say, "oh I forgot about that".  Hailey went from struggling to move 3 inches this week to moving across the floor into another room, behind furniture, into everything in the time that you turn your head to pick up something or run into another room.  I forgot about children's curiosity and they seem to be born with knowing what is forbidden (and that is what they head for first!)  I guess that is why women continue to have children....we know labor is painful but we forget the pain :-)

We had a low-key weekend.  Brayden had a full social schedule and the rest of us entertained one another.  Here are a few pics from the weekend.

Ready for big brother's game.

One last squishy face :-)

Basketball games and church can sure wear a girl out :-)

This one is blurry because she moved faster than I thought she could!

Hey guys...let me play!

C'mon...please?

No, really...I want to play!

Hailey seems to have gained a new sense of humor.  She now thinks almost everything is funny and frequently looks at us and cackles like she thinks she is funny too.  She is more into the boys and their toys (but, of course, they would rather go in another room most of the time.)  Fortunately, Hailey's appetite is still going strong despite the 2 teeth that are trying so hard to move through her gums.  She is down to only eating anything remotely close to baby food in the morning.  Partly, because we don't have a lot of time and partly, because she needs her to eat her daily dose of prunes.  Knock on wood, she hasn't refused much.  I think her favorite food is still beef stew and anything Mexican.  She is still quite found of Chipotle.  I figure I will keep giving her everything until she hits that dreaded toddler stage where she starts refusing foods (that is one stage I remember with both children!).

We are still working on moving from army crawling to 4 point hands and knees crawling.  We are doing a lot of kneeling and reaching (sides and center) to keep building core strength.  We are also doing a lot of sitting and reaching.  Clapping is getting closer.  Hailey has a habit of when we ask her to do patty cake, she will grab our hands and clap our hands together.  She also does this when we ask her how big is Hailey.  She raises our hands for "so big".  I'm getting so frustrated with a straw that I'm ready to recruit someone else to teach her.  Sorry, if that makes me a bad mom, but it is wearing my patience :-) 

Hard to believe that baby girl will be one in 40 some days!  She has a lot of big appointments coming up in the next couple of months.  She has another follow up audiology appointment.  My mommy heart can't take many more of these that are "inconclusive".  I'm requesting if she fails this one again that they try to do the ABR while she is sedated for her echo in February to check her heart.  I'm praying they can do them both at the same time.  I'm very much against having her sedated an extra time for her ears.  We know she can hear...we just don't know what she can't hear.  So we have hearing, cardiology, ophthalmology, follow up at the Down syndrome clinic, a 12 month well check, and then an eval for our EI services.  These appointments always make me nervous...her ophthalmology, cardiology and audiology are a given.   I'm always terrified of bad news or something I missed medically and that I'm a bad mom because I didn't "know" it.  Her appointment at the DS clinic and her eval for EI can have the same "bad"mom feeling but more along the lines that I "didn't" do something or "didn't" work hard enough with her.  The mommy-guilt can be overwhelming and the feelings after eval can be raw.  For now, I'm going to celebrate the the strides Hailey is making and live in the moment.  I can't change the outcome of the appointments so...let's start party planning!  1 here we come!