Wednesday, December 29, 2010
Sarah was right by our side, helping in every way she could.
So, we began our appointment by being evaluated by the “educational specialist.”
She started our session by asking a bunch of medical questions as well as inquiring about what developmental milestones Leah has reached or was working on.
In the meantime, Leah was happily playing with blocks with her big sissy.
She was stacking cubes (2 at a time) and knocking them down, as well as taking the blocks out and putting them back in the metal container they came in.
Then, the educator gave Leah a peg board in which Leah took out each peg as well as put them back in.
Next, Leah was to uncover the hidden object, which she did with no problem.
Finally, Leah had to pull a toy on a string to her, something she’s been doing since about 6 months.
Leah performed perfectly on every test she was given. There was not one thing that she DIDN’T do.
So why is it then that they have her at 12.3 months cognitively?
This clinic really ticked me off today!
Then the developmental nurse practitioner came in to do a minor exam on Leah.
As soon as Leah saw her, she smiled, waved and said, “HI!”
The NP didn’t even notice.
First, she gave me the third degree about why I didn’t take Leah for an ABR after it was recommended by the audiologist.
I explained that Leah has a tough time waking up after sedation and I didn’t want to put her “under” unless it was absolutely necessary.
I also reiterated the fact that neither her teacher, her speech therapist, nor I were concerned about her hearing (something I explained to the educator just minutes before). There is not a sound that Leah hasn’t heard when she was focused. If she is playing on the other hand, sometimes she just isn’t paying attention and won’t “hear,” but that’s part of being 1 and ½.
Then the NP begins telling me about other types of sedation that might work.
I reply, “I am not concerned about her hearing.”
She says, “Well kids with Down syndrome tend to have hearing loss.”
Excuse my language but, no shit Sherlock.
That’s why I insisted on tubes at 6 months so that all of the fluid that was stuck in her little ears could move to its right place and no damage would occur.
Next, she tells me I need to watch her weight.
Leah falls on the 90th percentile for weight, 75th percentile for height, and 98th percentile for head circumference on the Down syndrome growth charts. I guess that little weight fluxuation might be cause for concern if those weren’t her statistics since BIRTH.
Read her damn chart lady.
Besides, maybe that big ol’ head of hers has something to do with her weight! ;)
Then she asks about her recent thyroid screen. She says she doesn’t have it.
I said that Leah had her thyroid screened in September and that the results were normal.
She said, “Well I don’t have the results, where were they done?”
I told her that her pediatrician ordered them and should have the results but they were normal.
Her reply? “Well I don’t have them and if they didn’t come back normal then we would have to retest immediately.”
I rolled my eyes (Sarah scolded me for that ;)) then I said, “They were NORMAL!”
She finally tracks down the results and sees that they are indeed normal and goes on to tell me that she would need to be retested again in July… thanks again Sherlock.
It just ticks me off how these “specialists” act.
They are looking for the delay.
They are looking for the complications.
They are looking for every negative aspect of Down syndrome.
They over exaggerate delay and don’t listen to real-life situations.
I understand that it’s their job to look for things that a parent or typical
pediatrician might miss, that’s why they’re there.
But what if there’s nothing to miss?
What if everything is normal?
According to Leah’s therapists she still falls “within normal limits” in every developmental area except physically (lazy bones still won’t walk).
But according to the specialists today, her physical ability is one of her strongest attributes.
Obviously I'm on top of her health, I just told her about Leah's appointments with the cardiologist, ent, surgeon, and pediatrition we've had recently.
But she still questioned my judgement and knowledge.
I think I’m done with this clinic.
I’ll be looking else where for the services that Leah deserves.
And, maybe I might just have a little talk about all of this with one of my friends, who happens to be their boss! ;)
Things definitely need to change in that place.
Yep, call me “Mama Bear” today!
Saturday, December 4, 2010
Her eyes are a breath-taking shade of blue and those little Bruschfield spots she has, look like sparkling diamonds in them.
Her smile is contagious.
Her face is precious.
Her ears are petite and her earrings show off the perfect shape of her jaw.
She has the cutest little feet. Her middle toes are smaller then the toes on either side, and they are chubby little things that you can’t help but to nibble on.
I don’t know how to say what I’m about to say without it coming out wrong, so I’m just going to say it.
I have always thought of Leah as a beautiful child, even with Down syndrome.
Since those sweet first glimpses of my beauty, I have been able to see Down syndrome and quite frankly, I didn’t always welcome that sight.
It has been a constant reminder of her “differences” and disability.
It is tough to see people trying to figure out if she has it or not.
I don’t like the stares.
I just want my baby to be “normal” and her face is a constant reminder that she isn’t (not that any of us are, but that’s a whole other blog post).
Until the other day.
The other day in the van, I saw one of the most breath-taking children I have ever seen.
For the first time, I saw Leah as a beautiful child, INCLUDING Down syndrome, not “even with it.”
I saw a gorgeous face and I actually welcomed the Down syndrome characteristics.
They added to my sense of being awe-struck.
Once, Steven and I were laying in bed staring at Leah and I said, “I think Heavenly Father sent her with Down syndrome because if He didn't, she would be so beautiful that Satan would work REALLY hard on her and others around her.”
Does that make sense?
Now, I think Heavenly Father sent her with Down syndrome to show us the true view of beauty.
How He sees beauty.
I think the other day I saw a glimpse of what He sees.
I saw a beauty unlike I have ever seen before.
I could feel my spirit rejoice in her sight.
It is really hard to explain.
Long story short, Leah is beautiful...
...And I see it more every day.
Wednesday, November 24, 2010
I’ve not much to say.
The kids are great.
Steven and I are great.
Life is a dream come true.
Even with Down syndrome.
Sixteen months ago I thought my life would never be the same.
I worried about medical issues and therapies.
I worried about acceptance and stares.
I worried how the diagnosis would change our family dynamic.
Today I go about my day, with my little pumpkin head in toe.
She’s more like the other kids then she is different. Really, the only difference
in raising her is that we play with a purpose and a goal instead of just playing cause’ that’s what you do with a baby.
Her therapists give me ideas about development goals, show me activities to play with her to help her get there, and we play.
We hide from each other.
We climb (thanks Emmanuel and Sarah for teaching Leah how to climb the stairs… we really needed THAT skill! ;)).
We argue with each other.
And, I even have to discipline!
She likes to think SHE’S the boss…
Leah is just a kid, honestly.
AND a pretty darn cute one at that.
I have encompassed my job of therapist/mom.
I spend most of the day turning every activity we do into something educational/therapeutic for her.
And I love it!
Leah has shown me that I can do anything.
I sometimes call her “My Project,” and I mean that with ultimate adoration for her.
I have made it my mission to teach her and help her develop as much as I can.
I strive to leave no stone unturned, or activity undone, or game unplayed.
I am focused on giving her everything I have within me to help her.
She deserves that.
If I can teach her ½ of what she teaches me, I’ll be alright…
And so will she.
Wednesday, October 6, 2010
I guess no news is good news, right?
Leah is as fabulous as always, although she does have a runny nose and yells at me every time I try to clean her face.
My little “pumpkin head,” (as referred to by daddy) has started Occupational Therapy.
I LOVE Kristen, her therapist.
She is very knowledgeable, warm, and kind.
Leah likes her too, which is really all that matters.
The other day she taught me, “Oral Facilitation Techniques.”
Basically, she showed me how to stimulate her gums to “wake up” the receptors connecting the muscles and nerves in her mouth to her brain. This is supposed to help strengthen her oral motor skills.
Her speech therapist is doing something similar.
This girl is going to have the strongest mouth in Western New York by the time we’re done with her! Which I’m sure means trouble for us…
(If you’ve ever met a Sones’ kid, I’m sure you understand! :))
We are all working very hard to help Leah maintain her current “within normal limits” status of development.
And she is succeeding!
This month is Down Syndrome Awareness Month.
I have a lot of friends who are blogging, “31 for 21,” which means they are blogging every day this month with information about Down syndrome.
I tried to do it too, but since today is October 6th I’m sure you can see how well that went.
I see all of these other mom’s on Facebook happily sharing their little ones’ progress, pictures, and accomplishments. They are joyfully celebrating the gift of Down syndrome and the experiences they are having because of it.
There is true joy in Down syndrome.
It is an amazing diagnosis to witness.
It changes almost every way of thinking which you have ever had.
There is an indescribable peace with Down syndrome, which enters your life.
But on October 1, I did NOT want to celebrate it. I didn’t even want to think about it. I didn’t want to have to know that Down Syndrome Awareness Month even existed.
I was asked once if there was a surgery or medicine that could “cure” Leah, would I do it.
I definitely don’t want to change Leah. She is everything anyone could ask for in a child. But if there was a surgery or medicine which could make her life a little easier would I do it?
I could’ve just treated her ear infections with antibiotics instead of requesting her ENT to surgically place tubes in them.
I could’ve kept treating her Hirschsprung’s disease with irrigation and dilation, but I opted for the surgery which would “fix” it.
I know these are pretty silly examples.
What parent would choose otherwise, really?
But would I change her Down syndrome?
I don’t know.
She is one of the love’s of my life.
I don’t want to change her or that.
She teaches me so much.
Ok, so maybe I would change the side-effects of Down syndrome, but I would not make any decision which would change HER.
But eliminating those side-effects would change HER, wouldn’t it?
So would I do it?
I’m pretty happy I don’t have to make that decision because I kinda like her, just the way she is.
The other day I was getting dressed and I said to Steven, “Do I look like a retar…”
I CAN NOT BELIEVE I SAID THAT!!!
Steven said, “OOOOOH I’m tellin’ Leah.”
Retard was one of those words I used to say as often as I said the word The.
I never meant to associate retard with Down syndrome. To me, it was just a word used to explain something not-so-great.
Now, the word means SO much more and I can’t believe I friggen said it. My heart dropped in that second and I was very ashamed.
I tried to justify it as, “just a word.”
But I know better.
It has shown me that sometimes people speak before they think though. And if I, as a mother who is in awe and admiration of my “retard,” can say it by the slip of a tongue, anyone can.
I need to remember that, the next time I am offended when someone else uses it, and kindly respond, without letting my feelings get hurt.
But I HAVE to respond.
Because of my ignorance of the word before, it became a habitual word in my vocabulary. I don’t know how many people I hurt by saying it. I wish I knew before, what I know now because maybe now my heart wouldn’t be so sad by my own mistake.
It is strange how one simple word can stab you so easily.
Thursday, August 19, 2010
She practically jumps out of my arms if one of them sits next to us.
They love to play with her and include her in almost any activity they do.
Leah is Sarah’s baby doll.
She is Elijah’s TV buddy.
She is Hannah’s student.
She is Emmanuel’s gamer friend.
Her world is going to be rocked when they go back to school.
Who is going to play baby with her?
Or watch TV with her?
Or teach her?
Or play Madden with her?
She is going to be lonely and she will miss them all so much. I guess I have more roles I will need to fill.
She will be starting about 8 therapy sessions a week soon, so that will keep us busy.
Plus she will have ME all to herself! How can anything be better then that?
We will both miss the kids so much, but I have to try to look at the positive things which will come from their absences.
I will have more time to focus carrying over the lessons we’ve been taught by Leah’s teacher, physical therapist, speech therapist, and soon-to-be occupational therapist.
That, in its self, will be equivalent to several full-time jobs.
I was planning on transferring to a 4 year college in a few days. I am more then half way finished with my undergrad degree for special education and I was hoping to kinda fast track the next few years so I could be employed when Leah starts school.
I put that on hold.
Leah needs me home.
The day care she would’ve been going to would’ve been just fine for her. It was on campus. The educators seemed nice enough and the facility was very accommodating.
But Leah needs me home.
It’s taken 4 years to get where I am now, I can wait another 4 if I need to. I will never get this time back with Leah so my degree can sit a while.
I don’t need to be super mom. I just need to be mom. So that’s what I am going to be.
Plus a wife.
And a teacher.
And a physical therapist.
And a speech therapist.
And a occupational therapist.
And a playmate.
And a housekeeper.
And a financial advisor.
And a accountant.
And a Laundromat.
And a chef.
Happier me, in the end, because I chose to be all of the above for my family.
School can wait.
When I think of things from an eternal perspective, I will always know that I was here for my family. In the next life, I will not have any regret. We scrimp and borrow and pinch pennies so I can do it, but we do it because in the end, none of the other stuff matters more then family.
This puts A LOT of pressure on Steven to provide, but it makes him a better provider, honestly.
We have never went without.
There have been times when he has worked 2-3 jobs so I can be home.
He has excelled in his career.
He has more then tripled his income in the past 5 years.
I think the fact that his family needs him to, has encouraged him to work as hard as he does.
He is an amazing provider and we will be eternally grateful for him and his self-less choices too…
Sometimes life is better when it’s not about you, even when you really want it to be.
Monday, August 16, 2010
I started blogging because I was counseled by my Bishop that I should.
And I have continued because it has been very therapeutic.
But, everyone knows about what Leah is doing before I “tell” them.
I feel like I am loosing my ability to share the intimacies of Leah’s accomplishments because everything I say is old news, even if I haven’t seen a person in months.
But it is therapeutic.
And my friends like to read it.
And I can brag. ;)
So, if you read this and I tell you the same things in person, just humor me…
I’m starting to understand the “Person First” terminology better.
I’ve always thought of Leah as Leah first.
I never think Down syndrome first, even if that is what I mostly blog about.
Leah is Leah.
Stubborn (just like her daddy).
Spiritual (yes, 1 year olds CAN be spiritual, trust me).
With an extra 21st chromosome thrown in to make life interesting.
Now though, Leah is starting to look more like a kid with Down syndrome.
She didn’t before.
Maybe because she was so little, she just looked like a baby.
But really, it doesn't matter. Leah is still stunning.
Even when I can’t help but to see Down syndrome though, it is not the first thing I think of when I see Leah.
I still just see Leah.
It’s human nature to notice other people’s differences.
Differences make us unique.
But, I have always been a secret starrer.
If I saw someone with a disability, I would notice the disability first and stare at the person (when they weren’t looking, of course).
Leah is teaching me that there is so much more to a person, then the disability to stare at.
There is a man in our church who has severe Cerebral Palsy.
I have either stared or looked away when he was near, because I didn’t know how else to react to him.
Steven, on the other hand, sits with him, gives him sacrament, adjusts him, and talks and jokes with him.
He is truly Roy’s friend and has been since the day they met.
The way it should be.
Leah was sitting with daddy and Roy yesterday at church.
She was smiling and being silly with them both.
The happiness on Roy’s face was priceless.
In that moment, I was able to look differently at the world.
And look differently at myself.
I didn’t see a man with Cerebral Palsy being entertained by a baby with Down syndrome.
I saw my baby making a man smile.
It was a definite, “Ah Ha,” moment, that’s for sure.
I guess we all have our lessons we need to learn.
I just think it’s funny that my 13 month old (tear) is the one who is teaching me so many of mine.
Thursday, August 5, 2010
She is growing.
She has been sleeping more.
Yesterday, when I woke her from her nap, she looked different.
As if she literally grew over nap!
She probably did, anyway.
Yesterday after football and cheerleading practice, I noticed her Down syndrome traits like I never have before.
I could not, NOT see it.
It was strange, really.
Why does it even matter?!?!
I want to be one of those mom’s who don’t care.
I don’t want to be sad.
I wish I didn’t look for it.
I wish my stupid brain would match my heart.
I love Leah with every fiber of who I am.
She has a place within my soul I never knew existed.
Why does my mind keep bringing me to a place where Down syndrome matters?
Why does it keep looking for the characteristics?
Why does it focus on the things which make me sad?
On a lighter note…
Now, Leah won’t stop saying, “HI!”
It is so stinkin’ cute!
She knows it makes us happy when she does it, so she says hi about 1000 times a minute!
She was fitted for her orthotics yesterday...
I hope she doesn’t hate them.
Now maybe I can buy shoes that are out of the infant sizes, though.
It’s funny, Leah has the smallest feet ever and we just bought Emmanuel size 11 men's football cleats!
Leah’s physical therapist was also impressed with how well she is standing now...
After practice, she even tried walking from the coffee table to the couch!
She didn’t quite make it, but it was great attempt, that’s for sure.
We are also working on getting her to put things in...
She can take things out very well, but not-so-much put them back in.
Last night, she was a “putting-in” pro!
Leah absolutely LOVES praise and to be able to clap for herself, so whenever she masters a new skill, it’s a party in here.
I think that’s why she does it.
She’s a party girl, just like her mommy! :)
Tuesday, August 3, 2010
She says, “HI!”
She does it quite often when a new person walks into the room, so I even think she knows what hi means.
She can also say, “Hey!” “Dada,” “Up,” “Baba,” “Mama,”and some other babbles, with lots of new long- vowel sounds.
She signs, Dada, Milk, Up, Dog…
We are working on more.
Is there an end to this kid’s ability to amaze?
I saw a girl in the grocery store the other day who was about 12-13 and had Down syndrome.
I was very happy and sad to meet her.
I was happy because I am always happy to meet new friends who share Down syndrome.
I was a little sad because I don’t want my sweet Leah to be like her.
I can’t picture it.
I know this may make me sound bad, but it’s the truth.
Even though this little girl was super cute and happy, I don’t want Leah to be recognized immediately because of her Down syndrome characteristics.
I want her to be higher functioning then this girl seemed to be.
It was hard to see this girl and think that some day someone will feel as bad for Leah, as I did for her.
I keep hoping Leah progresses as she has been.
I hope Leah will be THE one who will change the view of Down syndrome.
Maybe she can be a teacher.
Maybe she can be a physical therapist.
Maybe she will be a mother.
Maybe she won’t have people feel sorry for her.
Sarah keeps saying, “I don’t think Leah is a Down syndrome baby.”
I tell her there were tests Leah had to make sure she had Down syndrome, but it’s ok because she is just a baby anyway. The test doesn’t really mean much.
Secretly, I wish Sarah was right.
I wish the doctors’ tests were wrong.
But I don’t want to change Leah.
Because she is one of the 5 most amazing kids in the world!
Why would I want to change this miracle baby?
So, why do I still wish I could change her diagnosis?
Wednesday, July 28, 2010
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.
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.
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.
Monday, July 26, 2010
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!
Friday, July 9, 2010
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…
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! ;)
Thursday, July 8, 2010
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.
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.
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.
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?
Tuesday, July 6, 2010
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!
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?
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…
Friday, July 2, 2010
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!
Tuesday, June 22, 2010
Leah was evaluated for speech therapy yesterday and I was told that she is at a 3-6 month level.
I really wasn’t expecting that.
Honestly, I was trying to convince the therapist that she needed speech therapy even though she is where she is supposed to be.
I have been told by EVERYONE that Leah’s speech is incredible and that she is right on target, if not ahead of the game.
I am amazed by how little it has negatively affected me.
If anything, I am motivated by this news.
Motivated to follow the therapist’s recommendations.
Motivated to show the world Leah can succeed.
Motivated to help Leah learn.
Now I really can say I know how it feels to get back not-so-good results.
Now I feel a little more like I “fit in” with the other parents of kids with Down syndrome.
Now I know that those tests don’t matter too much.
I am still incredibly proud of my little peanut and we will do whatever we can to get her on track.
Just motivation and encouragement as Leah does to me.
She makes me want to be better.
She makes me realize that what everyone else thinks means very little.
She helps me prioritize myself.
She helps me be a better me.
She is only 11 months old and she has taught me as much as, if not more than, any other person in my life.
Leah is a gift that I never knew I wanted and I am eternally grateful for her, bad evaluations and all.
Friday, June 18, 2010
A priesthood blessing is, “A blessing given by a Melchizedek Priesthood holder, by the laying on of hands and by inspiration, to one who is sick or otherwise in need of special counsel, comfort, or healing. If the blessing is for the sick, consecrated oil is used (James 5:14–15).”
So of course, as soon as Leah was born, she received a priesthood blessing of health.
There are two things which stand out about this blessing, even though I wasn’t there to witness it:
1). The nurses were amazed at the calm which came over the nursery the second the blessing began and the chaos that ensued when it was done.
I know this because they continued to express their amazement and kept asking if Steven and Mark could come back when the NICU was a little ornery ;).
2). Both Mark and Steven felt as though there was nothing wrong with Leah. It was like Heavenly Father didn’t express a concern over her health or well-being; she was ok.
How could this be?
She has Down syndrome.
So my immediate reaction was, “Well maybe she doesn’t have T21. Maybe she just has some traits and when the karyotype comes back, it will be negative.”
That’s not what happened.
Then I thought, “Maybe she doesn’t have hirschsprung’s disease. The biopsy will come back with normal ganglion cells.”
Nope. Not that either.
When I was alone after Leah was born and I was able to absorb what I had been told, I prayed.
I prayed in ways which I never prayed before. I cried out to Heavenly Father with everything that I had within me.
I was lost.
I was scared.
I was alone.
He told me not to fret.
He told me that Leah would be, “as high functioning as she can be with Down syndrome.”
Those were His exact words.
Can it be?
Can Leah really have abilities and capabilities which I was told were very improbable?
Consistently, Leah has been measuring, “within normal limits.”
She has never fallen behind.
She continues to progress.
Then I think of my answered prayer and I wonder, “Did He really hear little ol’ me?”
Did He really answer me?
No logic can explain it, other then I was answering myself. But that’s not what it was. And even if I was talking to myself, how come I’m still right?
Faith is a really hard thing to have sometimes, even when your prayers are proven because…
Even with all of this, I keep waiting for the “train wreck” to happen.
Thursday, June 3, 2010
Leah had her first ever camping trip this past weekend. It was filled with sun, play, water, fresh air, and really bad-for-her food!
She absolutely LOVED the pool, the marshmallows and smore’s, the turkey burgers with ketchup, playing in the grass, and of course swinging!
It’s times like this which help me truly appreciate how raising a child with Down syndrome is really not much different then raising a “typical” child.
I was able to accept comments about how stinkin’ cute she is, without wondering if they saw her disability.
I was able to enjoy having a baby, without thinking about my baby’s future.
Our getaway showed me that Leah’s disability really doesn’t define her and most surprisingly, Leah’s disability doesn’t define me as a mother.
I CAN forget about it.
I CAN enjoy her without worry.
I CAN be proud of her without wondering, “what if.”
I CAN just be her mom.
I needed this.
Tuesday, May 18, 2010
Like it’s something special.
This has me curious.
Why is it unique that I can voice my feelings?
Should I keep them quiet?
Do others keep their emotions to themselves?
Being a parent of a child with a disability is a very tough job. It can be, “all sunshine and flowers,” but sometimes it’s not.
I have friends who are experiencing this whole parenting thing for the very first time and won the Ds lottery.
I have friends who are experiencing this whole parenting thing for the very first time and won the Ds adoption lottery.
I am one who is experiencing this whole parenting thing for the fifth time but this is my first lotto win…
…and it’s hard!
So why keep it to myself. It’s not like I keep the good things to myself; I share them everywhere I can.
We have to own our feelings.
We have to accept them.
Very few of us really want our children to have a disability.
We don’t want to see them struggle.
We don’t want to have to fight for them.
We don’t want people to stare and whisper.
We don’t want people to feel sorry for us.
We don’t want to ask, “Why?”
But it all happens, and it’s tough.
Regardless of if you are a first time parent, adoptive parent, or a parent of multiple kids, you are a parent first. Your emotions are valid. You deserve to acknowledge them. You deserve to feel them and to work through them.
And so do your kids…
Saying that, “Sometimes being a parent of a child with special needs is not fun,” is being honest. But that doesn’t mean that you love your kids any less then any other parent. It is tough. It’s rough. I wish that I didn’t have to do it.
I love being a parent to Leah and yes, there is a difference.
Leah is amazing and beautiful.
She is smart and silly.
She makes me proud.
Dealing with all the stuff that is thrown at me because of Down syndrome, stinks. But
I gotta do it because I love her and she needs me to.
That doesn’t mean I have to like it though…
Sunday, May 16, 2010
Oh yeah, I got a pretty cool prize too!
Within 10 minutes of being there though, I had to go to the restroom because I was in tears.
When babies are born (well I guess we can add getting ready to be born too, now) it all comes back.
The memories of that horrible/beautiful time when Leah was brought into this world.
My heart just aches and aches.
When I sat down I remembered that it was about exactly one year ago that the shower was for me.
It was a beautiful shower too.
I was getting ready for my “perfect” little princess.
The next to last baby because I certainly couldn’t have an odd number.
We had never been so prepared for anything before(I didn’t have to buy diapers for about 6 months! :))
We had no idea what was ahead.
The sonograms were fabulous. My health was perfect (I only gained 5 lbs!). We were SO ready. I loved my pregnancy with Leah.
I don’t think I wish I knew.
I would’ve worried too much.
I was lying in bed thinking, and talking with Steven, about it all last night.
The Doctors were a little nicer when breaking the news. Not that they were mean just a little too matter-of-fact.
I had a better understanding what Down syndrome was (I pictured people who were institutionalized).
I didn’t have to be away from my other kids for so long.
I didn’t feel so much sorrow.
I wasn’t so scared.
The pain wasn’t so hard to bear.
I knew more about it all.
I wouldn’t change…
Leah, of course!
The time Steven and I had to grow together.
The knowledge I’ve learned.
The advocacy spirit I have been given.
The gentleness Leah’s siblings have towards her.
The knowledge I’ve been able to share.
That we were so prepared…
There are just too many things that I wouldn’t change, to list them all.
My cousin’s baby shower was very eye opening. Maybe I needed those tears to help me cope just a little more with it all. I do feel better today and it helped me put things a little more in perspective.
Leah’s birth has been such a blessing for us. We have so many things to be grateful for because of it.
Even if it started as a nightmare.
Wednesday, May 12, 2010
Seriously, she did!
If her physical therapist didn’t hear it too, I wouldn’t have believed it. I would have passed it off as some cute babbling.
But that’s not what it was.
What 10 month old says, “All done?”
What 10 month old with Down syndrome says, “All done?”
Mine Does! :)
I’m not bragging though; I’m just proud.
These are the type of accomplishments I really never would’ve thought twice about with Leah’s siblings. They just did them.
I have no idea when they rolled over, sat up, waved bye-bye, or said, “All done.”
Things are different with Leah. She is sort of under a microscope. Each and every milestone is a miracle, not just a milestone.
When she reaches them on time it’s as if the Heavens open up to show us what God is made of.
When she falls behind there are a million rationales and excuses why.
“Every baby is different.”
“Some kids do things in a different order.”
“Well, look at what she CAN do though.”
“She’s working so hard on mastering this; she’ll make it to that.”
Why can’t I ever use the reason, “She has Down syndrome so things will take longer?”
It’s like I still can’t admit it.
I can’t see it.
Or do I just not want to?
I feel like I have to prove to the world that MY baby is different.
She will not have any delay. She will develop normally. She won’t need special ed. She will live with her husband. She will have babies. She will be successful.
Probably not though…
Tuesday, May 11, 2010
You know the one, with all of those warm and fuzzy commercials.
We converted to the church about exactly 6 years ago.
I grew up Catholic and Steven grew up with not much religion.
So when you are Mormon, there are certain things you kinda take for granted. One of which I find myself pretty guilty of lately.
Our church teaches that children who are born with a disability are unique children of our Heavenly Father. They are valiant warriors and strong souls. They proved their loyalty and love for Heavenly Father‘s plan in the preexistence in a way which grants them esteemed status.
Their disability is a shield from the temptations and workings of Satan.
Heavenly Father loves them so much that they are protected in this life from making really dumb choices which may stop them from returning to Him.
He wants that for all of us, but those spirits have already proved that they deserve it.
Here’s what I have taken for granted...
I have this celestial being in my midst.
She is a real-life angel.
She is as close to Heaven on Earth as you can get.
Heavenly Father trusts HER to ME!
That just doesn’t seem possible!
I’m not really that good of a person.
I’m not quite sure He thought this one out very well.
But I guess He is Heavenly Father and he really doesn’t make mistakes, right?
So how do you handle THAT?
How do I become worthy to be her parent?
How do I believe that I am worthy?
How do I make sure I follow along in her footsteps?
This is a pretty big challenge He has for me.
I am entrusted to raise this celestial child in a way which He sees fit.
I’m sure He’s watching my every move.
No pressure... :)
Thursday, May 6, 2010
Look at my baby, don’t you wish yours was as cute as mine?
Other days I hope no one notices.
Why does it matter so much?
Why do I even care?
Is it because I don’t want the sympathy?
-Probably a little. Why would I want sympathy for this little miracle I am tugging around?
Is it because I don’t want to answer the million questions I get?
-Probably a little too. It really is no one’s business.
Is it because I don’t want to see THAT look from everyone? You know the, Oh, I am so sorry, look of shock everyone gets when they find out.
-Most definitely that.
I wonder if I am shamed, but I know that’s not right. I really am proud of Leah, just as I am with all of my other kids. If anything I am more protective and gentle with her then the others.
I wonder why any of this even matters.
Leah is beautiful, after all.
She is unique.
She is smart.
She is strong.
She brings out the best in us all.
She is mine!
So, who cares about everyone else, right?
Monday, May 3, 2010
That inevitable time when Leah will become delayed.
Or is it inevitable?
I feel like I am still in the “honeymoon” phase of this whole Down syndrome thing.
Leah is slightly delayed physically but not yet in any other category.
I am assured it will happen though.
So why do I have high hopes for her future when I have been told time and time again that Leah will need massive amounts of help just to live in her own apartment?
I feel naïve.
I am also told not to limit her potential.
How can I not limit her potential?
I have all of the “experts” around me reminding me that the delay will begin, it’s just a matter of time.
When will I get past this phase?
When will it not bother me that I have a child with Down syndrome who will need a lot of assistance?
Why does it still seem like it’s not true?
This is a crazy thing, this Down syndrome stuff…
Saturday, May 1, 2010
I learned some pretty interesting things.
Don’t ever put money in your child’s name; use a trust.
Be very prepared for your child’s IEP meeting because most of the time their recommendations do NOT fall in line with your desires for your child.
Keep lists and records.
And other stuff, but those are what stick out in my head.
The keynote speaker was Carrie Bergeron-Desai. She is 33 and has Down syndrome. She was very articulate and inspiring. I was extremely impressed with how well she answered questions. She was quick on her feet and very knowledgeable.
She has her learner’s permit but has chosen not to get her license. She doesn’t like to drive in the busy traffic of Rome, NY so she just drives with her dad.
She is married but in January her husband’s parents separated them.
That broke my heart.
I reconnected with some parents I have met briefly before and met some in person who I only knew through Facebook.
I made a few new friendships and was able to meet two amazing grandparents who I have heard so much about.
All in all it was a good day, even if it started at 6am!
Wednesday, April 28, 2010
While driving to Leah’s appointment at the Down syndrome clinic today, I saw a few protesters outside of a Planned Parenthood. One held a sign proudly saying,”Abortion stops the beat of a heart.” Another sign read, “Abortion kills babies.”
As I kept driving I realized that some mothers might just be going in that building to “get rid of” a baby with a disability, most-likely even Down syndrome.
I was talking about Leah on the phone this morning with Steven and he said, “I love her.”
He says this all the time. We all “love her.”
But there was something different about this “I love her.”
It was pure.
It was sensitive.
It was beautiful.
It was true.
It was the type of statement that melts your heart.
Leah does that to us. She makes us all want to be better then we were before. I don’t know why.
Is it her spirit?
Is it her disability?
Is it us reacting to her disability?
How many daddies will never know this feeling because their baby wasn’t good enough?
How many mamas will regret their “choice” every day because they were so selfish?
No one wants to have a child with a disability; none of us want to see our children suffer but…
I love what Down syndrome has done for me and my family. I am grateful for Leah, every second of every day, disability included.
Tuesday, April 27, 2010
For years, you save for your dream home and the time has come to buy! You walk through several houses, many of which are interesting, but not quite perfect.
Finally you find THE house. The location is great. It has 5 bedrooms, 4 bathrooms, hardwood floors, and one entire wall is a giant window showing the most breath-taking view that you have ever seen.
Everyone you know is happy for you and your new house. You can’t wait to move in.
On the day you are scheduled to close, you receive a call from your lawyer explaining that the homeowners changed their minds and have decided not to sell.
You are shocked and sad. You have planned, waited, and prepared for this house, but now it is gone. You picked out new paint colors and decorated it in your mind at least a million times. You wonder, “How could this happen to me?” You think you will never find your perfect house again.
You remember a cute little house in the city that you walked through a few months earlier. There was something about that house which was comforting when you were there and the need for a home of your own is still strong. You decide to put an offer in for this house. Your bid is accepted. You move in within weeks.
When you tell everyone about the loss of your “perfect” house and plans for moving into the second one, you receive many condolences. Everyone is sad for you and all of your friends and family wish they could “fix it.” Nobody thinks it is fair.
You go to the new-older house immediately after you close. You wonder why you didn’t realize that it was so close to your favorite store. As you walk in the front door, you see a beautiful window, full of stained-glass artwork, which was hidden by a curtain before. As you continue to walk through, you notice the stained and dirty carpet, decide to look at what is underneath, and are amazed by hardwood floors which are even more elegant than those in the other house. There are only 3 bedrooms but two of them have adjoining bathrooms with awesome claw-foot, porcelain tubs which are very deep, and you can’t wait to soak in them.
You begin to realize what made you like this house initially. There is sweet character here. It is unique. There are rooms attached to rooms and many hidden spaces that you never expected to see. This house will need work and there are things about it that aren’t quite “perfect,” but you kind of like the imperfections; they add to the personality of the house. You immediately develop pride and love for this house because it is yours, imperfections, beauty, character, and all.
You can’t wait to tell those you care for how much you love your new home. You want to show it off to everyone and let them know how very excited you are. You don’t want to feel sadness anymore; you love this house and wouldn’t have it any other way. The other house would have been nice too but the one you were given will bring you just as much joy so there is no need for condolences. This home is where you belong, you know it, accept it, and love it. You will be happy here and look forward to the experiences you will have within its walls.