Reports

Yesterday was Leah’s first speech therapy session.

It went very well.

During physical therapy, about an hour earlier, she was full of energy and chatting up a storm.

During speech… she was quiet.

Figures.

Even with her timidness though, her therapist was quite impressed.

It was very reassuring to see the surprised look, on her new therapist’s face, when Leah would do a certain “skill”.

She wasn’t expecting Leah.

She was expecting a baby with a 3-6 month skill level.

This is why those dumb evaluations are so dumb.

The therapists must show a need for services so they have a job.

Sometimes skills are left out or deemphasized from the reports, just to show the need.

I know for a fact that since Leah has been in Early Intervention (during her initial intake and her first IFSP) her level of need has been classified as moderate, even though she has continued to stay on track, with her typically developing peers, since birth.

For all intents and purposes you can say Leah is a “typically developing” baby.

But she still gets services, and those services are increasing.

OK, so sometimes therapists don’t just show a need for services just to keep their
jobs. I know Leah’s therapists don’t.

They exaggerate her need, so she continues to get services, because the therapists are teaching me how to teach Leah. They are helping me to keep her on track. When she starts to show a delay, we work on new things to get her back in the right direction. There have been a million times I have been shown new tricks to help Leah “get it,” (and so they are able to work with the cutest kid and most fantastic family in Western NY ;)).

And so they have a job.

I am forever grateful for Leah’s therapists. If I hand-picked them, I would’ve picked the ones we have. We are very blessed.

Because of our hard work, if they put her skills at age level on the reports, Leah wouldn’t show a need for them anymore and they would be gone.

But then there are those reports that just don’t make sense. It doesn’t seem like they were looking at the same kid.

Now, to be completely honest, I did leave out a few things when the original speech therapist did her evaluation.

For example when she asked if Leah responds to, “NO,” I said no.

Leah responds to, “aaat, aaat, aaat.” But I left that out.

And I did it so she would qualify.

But the therapist did make her evaluation based on her observation as well as my information.

She did leave out a few things I told her.

She happened to not see some of the things Leah did or said.

She was more focused on telling me about every child she has ever met with Down syndrome and how “happy, loving, and cute,” they were. How blessed we are to have her. How she will surprise us. How…

You get the point.

I do appreciate all of these kind words, but when you’ve heard them about a zillion times, you just let the people say them so they feel better about it all. It’s like they need to say these things to confirm to themselves how great Down syndrome is. I know they are being reassuring and are doing what they think they can to help. I really don’t mind, but I kinda just go blank when I hear the niceties, none-the-less.

I digress…

She was more focused on comforting me then evaluating Leah. She knew there would be a need. She made it as apparent as she could so Leah would get whatever services I want her to get.

I guess I appreciate that, but the report was REALLY tough to read.

That’s the problem I have with the reports.

When it is your kid being reported on, you don’t want to see that he/she is severely delayed, even if it is for good reason.

No report is going to say that a child no longer needs services, when your child has Down syndrome, because it’s one of those diagnosis’s which automatically qualify.

So why do they even bother?

It’s all just a bunch of bureaucratic mess.

But how many parents have been in tears over the reports?

How many parents have felt like they were punched in the gut when they read the reports?

How many parents spend countless hours preparing for IFSP’s or EIP’s to show that their child needs this service or doesn’t need that one?

Luckily, we live in NY and our children here have every service available to them, at every convenience possible, by some of the best therapists in the country.

I couldn’t imagine having to fight for Leah to get a service that the government/school district didn’t think she needed. Well, I can imagine it, but I don’t want to have to do it (sorry honey, no moves down south, or out west any time soon ;)).

I guess then you would want the reports to show as much of a need as they can.

And maybe then being “severely delayed,” wouldn’t matter so much.

No, I’m sure even then, that label would ping the heart.

I wish reports didn’t matter so much.

I wish I could just tell the therapists what services Leah needs.

I wish Leah didn’t need services at all.

I wish…

Dumb reports.

Happy Birthday Leah!

Leah’s birthday was fabulous!

It was one of the most inspiring, peaceful, and lovely days I’ve ever had.

The spirit in our home was magnificent.

The love which was felt and given was immeasurable.

We started the day with presents.

Leah stayed on the floor the entire day only playing with her new toys. She completely ignored the rest. It was as if she knew that those toys were special.

We muddled around for most of the day with no real exciting plans but to have fun.

In the evening we went to a pageant which our church performs. It is a magical performance. It is actually one of the world’s largest outdoor plays. It was very peaceful.

I had no sense of sadness.

None of the despair of the year before came back.

I simply enjoyed the beautiful day with my family.

It felt as though Heavenly Father was pouring out His spirit among us.

It was as if He was here celebrating it with us.

If this is what Leah’s birthday will bring into our family, I can’t wait to experience another 1000 more! :)

Happy Birthday Leah!

The Night Before Leah's Birthday

Maybe I’m just a little hard-headed…

And stubborn.

And impatient.

And moody.

And emotional.

This past week has been a major roller-coaster for me.

My world of Down syndrome has been tough.

I must begin by apologizing for being so harsh towards my local support group. I think I misjudged them and portrayed them inappropriately. I probably misunderstood a lack of passion for lack of support and there is definitely a difference. It’s like when you get a new car. To you it is the best car ever, to others it’s a nice car but maybe not the best. They are happy for you, but have other cars on their minds…

Make sense?

It all started with the lack of passion for my idea, (to consult with parents by my local group) which kinda deflated my passion too.

Then the speech therapist was talking about Leah to a stranger.

Then we had a not-so-good hearing test.

Then she was labeled, "severely delayed," in the speech report and was approved for speech therapy 3 times a week (we are only doing 2).

I am grateful for Leah's ability to have the services available to her, but I wish she didn’t need them.

And that report was tough to read.

It was like Down syndrome was thrown at me again this week, and boy, it came with a vengeance.

Now, it is the day before Leah’s birthday.

I am so excited for her to have a great day!

I can’t wait for the special meals, watching her open her presents first thing in the morning, cake and ice cream (don’t forget the extra scoop for crawling! ;)), and playing, playing, playing.

I want to do nothing but celebrate this little love muffin, yet I keep feeling tears well up in my eyes because of the memories of the hours and days after her birth.

I keep having flashbacks of the sadness from a year ago.

I keep feeling the emptiness in my stomach.

I keep remembering the anxiety.

I keep getting glimpses of the despair.

Then I look at her and it goes away...

...She will smile, make a silly face, point at something, yell at something/someone, or just look incredibly adorable, and I forget it all.

She did that to me last year too.

Every time I felt like I couldn’t take it any longer, I would go to Leah and know that things weren’t so bad.

Her love radiated then, just as much as it does now.

I can’t wait to count the smiles she gives me tomorrow because I’m sure there will be a ton.

But, I most definitely wish the touches of sadness would go away.

How can I be sad with such an amazing kid in my arms?

I think that part of the mourning is still with me a little. Maybe that’s why I have taken things so hard this week. I’m hoping that tomorrow it will disappear again and we can just celebrate the birth of one of the coolest people in the universe!

I’ll be sure to let you know how it went! ;)

Ignorant Therapist

The day before yesterday, Steven said, “Oh yeah, I forgot to tell you that I work with someone who knows Leah’s speech therapist.”

Me- “Umm, she doesn’t have a speech therapist.”

Steven- “Well, whoever did her evaluation; she’s her daughter’s speech therapist too.” (I’m paraphrasing, of course)

Me- “How the heck does she know that she is the one who did Leah’s evaluation?! She’s not supposed to talk about her students!!!”

I told her physical therapist about it; she’s reporting the incident.

This speech therapist works for one of the most established/credible institutions in the area.

Not only that but…

Yesterday I got a copy of the evaluation in the mail and I honestly don’t know what child she was evaluating.

About 90% of everything she has Leah not doing, she does.

Great.

I’ve emailed the local support group (who was not very encouraging about the whole consulting thing) and asked them if they would be willing to help me start a satellite group which would be closer to my area. There are parents who live even further away from the meetings then we do, so I assumed it would be valid to start another group. Plus, I don't want to completely break away from them because they do have some great members and fantastic resources. I thought maybe a satellite group would be a good compromise.

No response.

So now, it seems as though I’ve upset the local Down syndrome group because I want to add to their services which apparently means I was stepping on their toes.

Because of an incidence with one of their therapists, I am about to upset one of the major therapeutic players in the local Ds community.

Nice.

Oh well, gotta do what I gotta do for my baby I guess…

…it just stinks always having to be the bad guy.

I’ve always been the one to stand up for what’s right with all of my kids.

I’ve had more then one uncomfortable conversation with teachers, had to "fire" Leah's first teacher, and even had a pretty big hand in the retiring of a principle because of inadequate results.

But I don’t wanna do it.

I don’t wanna be the one to always point out faults.

I don’t wanna be the talk of the groups because of my boldness.

I don’t wanna be the parent that teachers really love or REALLY hate.

I don’t wanna be the one who people say, “watch out for...”

I don’t wanna be known as the bad guy.

But I guess if no one else will, I must. My kids deserve the best in everything and it is my job to make sure that they get it.

I was hoping that the special needs community would be a little more compassionate, organized, and professional.

There are some, but honesty in my experience so far, about 50 percent of them are not.

I guess I can add a whole other group who has (or will have) me black-listed now.

At least my kids will have the best…

…and that makes it all worth it, right?

Another Group?

I am trying to make a difference in the abortion rate of kids with Down syndrome.

I have met with an executive of a local hospital network and discussed becoming a consultant for the parents who have a prenatal diagnosis, so they can get the other side of the statistics.

He has referred me to the chairmen of the OBGYN and Family Medicine departments at the University of Buffalo. He made sure to emphasize that I could let them know he was sending me to him.

It is very exciting!

Anyway…

I want to be able to meet with these parents to give them support and education about what it is really like to have a child with Down syndrome.

There isn’t a parent who I have met who doesn’t wish they were more informed when they were given the diagnosis.

More information could make a difference in choosing life and most definitely make a difference in the grieving process, I think.

I am not getting much support from our local Down syndrome group.

They have basically said, “Been there, done that. Don’t waste your time.”

But my experiences with this group have not been very positive from the beginning.

It took them more then a week to respond to my email when I finally was ready to reach out, and the response was a simple email back. Not real words of comfort, or personal communication at all.

The experience was very sterile.

When we went to our first conference, not one person came over and introduced themselves to us.

We had never met any of these people and not ONE person introduced themselves.

Sure, there are members of this group who I respect tremendously, but for the most part they seem to be very haughty and arrogant.

It is hard to picture myself hangin’ with these people, let alone having Leah grow up with them.

It is very sad, actually.

The Dr. who I met with said that he thinks I should form another support group and include the consulting as a service but I don’t want any contention.

I don’t think they will welcome or work with another group.

It is very disheartening that I have had these experiences.

Our community is so precious and dependent on one another.

I don’t think I could depend on most of them or the group as a whole.

Leah needs friends who will experience some of the same things she will and I need to feel comfortable with the family members of her friends.

Steven said, “Forget them, why does she need to be friends with their kids?”

I said, “Well you want our kids to be friends with other Mormons because they are Mormon and they share something together, it’s the same way with Down syndrome. I don’t want her to ONLY have friends with Ds, but she should have some (like Gracie and Kennedy :)).”

Maybe I will take my friends advice...

Besides, we will need to find her a husband, right?

Crawling!

We have a crawler!

It is so stinkin’ cute!

She is going EVERYWHERE now.

Leah’s physical therapist taped her abdominal muscles last Thursday because she was
so close to crawling but just wouldn’t keep her tummy off the floor.

That’s not a problem anymore.

She crawled, more then a few “steps,” yesterday at my mom’s house.

I actually bribed her with an extra scoop of ice cream if she would crawl by her 1st birthday.

I’m not sure if it was the ice cream or the tape but whatever it was, I’ll take it!

It is definitely time to invest in some gates…

Today...

So, the speech evaluation was a just a “snapshot” of Leah’s abilities. According to the “charts” Leah is exactly where a 9-11 month old should be. Her speech is still considered, “within normal limits,” so we’ll just keep tugging along and progressing.

Leah is also emerging in MANY cognitive and physical areas…

She is beginning to crawl (she takes about 5-6 “steps” then falls flat on her tummy).

She is starting to recognize the names of people she loves.

She is starting to follow directions.

She is starting to point.

She is starting to sign.

She is starting to pull herself up to stand.

The ONLY television show she likes is “Singing Times,” thanks Dori Anne!

She LOVES to sing and dance!

Yep, we have a little miracle baby! ;)

Not that we ever wondered otherwise.

This Down syndrome stuff isn’t so tough after all…

I have never smiled more then I smile today.

I have never loved more then I love today.

I have never enjoyed life more then I do today.

I feel so blessed on days like today!