Monday, June 02, 2008

It is what it is....isn't it?



Those are words that I have learned to live by.

Yesterday I learned it again. I think.
I took the little girls in for their doctor evaluations at the infant development center. This is step two on a ladder of about 50 steps. Our hope is that at the top of this ladder, they will both have been given the additional help they need to lead productive and independent lives. Both girls have special needs and we needed the doctor to give them a "diagnosis" so they can be referred to treatment. Her Royal Majesty is still a bit of a mystery for all of us. We know that there ARE delays, but we don't know what is causing them. We are just going down the list and trying to rule out things. This doctor asked about a thousand questions and then wrote lots of notes. He ended up referring her to a program for physical delays. This one is what I am the most excited about. We are finally going to get to the bottom of her hip displacement issues and aggressively address her low muscle tone/loose joint issues. There are other things that he noticed. Things like the fact that she doesn't hold her sippy cup on her own very often and when she does, it is with an open hand on each side instead of grasping it. She also doesn't hold onto things and try and walk. She fists her hands instead and uses them to help balance. This led the doctor to think that there is some neurological stuff going on that we haven't ruled out yet. She has very low muscle tone but has great fine motor skills (that is usually not the case). His feeling is that she doesn't know HOW to coordinate her muscles and that somehow the signals aren't going from the brain the to body the way that they should be. Also, with her weight issues, he asked some very good questions and told me that at this point he thinks her lack of weight gain is metabolic, not "bad mommy". She feeds just fine, it just doesn't stick. This has also been my feeling for the last few months. All in all, good questions and good things for me to use when I start my new dialogue with my NEW pediatrician. I liked my last one OK, but I felt that each time I went in I as getting lectured. My concerns about Norah were met with some sort of lecture about how I wasn't being a good enough mommy (you aren't feeding her right, you aren't giving her enough attention.....). I felt that the things that I felt were bigger issues were kind of brushed aside. Things that we are now finding out actually ARE issues. I just didn't know enough to push back.

Socially, Norah is just fine. She bossed around the baby, the social worker and finally the doctor during the whole visit and did her best impression of a two year old by refusing to stand on her own, carry her own weight when assisted with standing OR point to her nose when asked (and we have been practicing that one). I know she can do all these things, but today she just couldn't be bothered. I could have told him that she was on target socially. Her cognitive receptive skills are in question, but since she picked up the words "crazy", "poop" and "shut up" from her siblings this week, I am pretty sure SOMETHING is getting through to her. All of us think that at some point she will catch up and be just like a typical girl.

Ace is much more cut and dried. While there is a large range of abilities within the diagnosis of Down Syndrome, all our kids need pretty much the same thing. They all have low muscle tone--so that means physical therapy. They need help learning and practicing how to do everyday things like feeding and dressing themselves, that means occupational therapy. Our kids are 50% more likely to have hearing loss--usually because of their smaller ear tubes that cause more infections. That means audiology or an ENT. Our kids also often have difficulty learning to speak clearly, that means speech therapy. Our kids are 15 to 20 times more likely to develop leukemia, so there is that check up (so far, that has been our pediatrician). 50% of our kids are born with serious heart defects that need surgery (Ace does NOT have this, thank goodness), that means cardiology. You get the picture and that isn't even the end of the list. There is just doctor after doctor after doctor that needs to be in the loop and as the parent, it is our job to the be the team leader and make sure that we are all working together and keeping each other informed. That feels very overwhelming to me. I am still learning what I am supposed to watch for and fight for.

So, the doctor stuff for Ace was pretty much talking about the programs and what to expect, touring the facilities and trying to decide if I want home care or to take her to the center. I also had to sign lots and lots of papers (ALMOST as many as buying our house). Luckily we have a really great social worker who guides us through this process. At one point in the meeting she and the doctor asked me if we were going to get a medical card for Ace. When you get a medical card for your child, it means that the state pays for her therapies. I actually debated this one. We currently have private insurance and it would cover lots of this stuff. I wasn't sure I wanted to have the state pay for something that we could pay for ourselves at this point. I decided to do it because the social worker pointed out that Ace deserves to have this so that for the rest of her life, she has access to free medical care and free therapies. We will not always be here for her. Also, programs get funding based on how many kids are enrolled, so the more they have enrolled in the state funded programs, the more therapists they can hire, the more they can offer. Fair points all around. The biggest one though? We already paid for this, with our taxes. When you make more money, you pay more taxes, MUCH more--so why pay twice? Why not take that money and donate it to the local center, or hire a better therapist for extra work, etc? Anyway, that was my consideration. Things that you never realize you will be thinking about for your 8 week old baby. That feels overwhelming to me.

I try very hard NOT to think about the battle ahead when it is time for school and we want her to be mainstreamed. What if we have a school district that doesn't want to do that? Do I have it in me to fight that? I try NOT to read the new information about how people with DS are much more likely to have Alzheimer's and now that they are living longer...well, I really, really worry about who will take care of her when we are gone. I really, really try not to think about the time when she is aware enough to know she is different but still wanting to be like all the other kids (typical teenage stuff). I already pray that there will be a nice group of kids in our church and school that will include her and see her for the little spirit that she is and not be like I was as a teenager. All of these things are overwhelming for me.

Here is the strangest part of the whole day. As I was signing the papers to apply for the medical card, both the social worker and the doctor started to look a little bit uncomfortable. They explained that for her to qualify, they needed to give her with a Stage 2 diagnosis. That means that they had to declare that she is mentally retarded. They wanted to know if I was OK with that. They acted like they expected me to burst into tears. I was a bit confused because she is retarded. Isn't she? Isn't that part of what Down Syndrome is? They explained that she isn't retarded yet. To be retarded means you score lower than normal on an IQ test or that you are slower (which is the real definition of retarded--to slow) than typical people at the same tasks. Right now she does everything the same as other babies, so she isn't retarded yet. She is just a baby with an extra chromosome. At some point, she WILL be retarded. It ranges from mild to moderate, but it is going to happen. Saying it doesn't change it. It is what it is. Apparently some parents get really upset at this point. They don't ever want their child classified as this and never accept the help from the state. I understand that everyone deals with this differently, but for me it doesn't change what it is.

I know that Ace, like ALL people with Down Syndrome is going to be capable of learning. Some things will be easier for her than others. I know the laundry list of possibilities. She could be very high functioning or she could be low functioning. I don't know what her package is quite yet. It is what it is. Calling it one name or another doesn't really change anything, does it? Maybe I am just not there in my journey as a parent of a child with special needs. Maybe in a few years I will look back on this and be shocked at how little I know (heaven knows that I do that about adoption, almost daily). At this point, it just doesn't matter to me what you call her, that doesn't overwhelm me, it is DOING it that leaves me unnerved. I guess I just left that meeting with the feeling that out of ALL of the things that are currently running around in my brain and making me feel overwhelmed, calling my child retarded just isn't one of them.

It reminds me of a conversation that I had with Lauren the other night. She is finally getting what it means to have Down Syndrome (for awhile she thought that anyone with flat features and slanted eyes had Down Syndrome--including her Korean friend Nicole and the president of our church, Thomas Monson.....). She was crying and telling me that she is afraid that kids will call her sister "retarded". I told her that it sounds like that is not a nice thing to hear, but that in fact her sister IS retarded but that just meant that she learned things a little bit slower. She would be better (and therefore NOT retarded) at other things, like making friends and being kind to others. It wasn't something to get too upset about because it was true. We just needed to help other kids understand the correct meaning of that word.

I might be the only one here that doesn't have a problem with the label. Just the repercussions....

Two posts in two days. Look at me go!! You can thank the tummy bug that Jacob continues to fight for this one. I haven't left the house yet.

Also, several of you noticed the plane. Man, you guys are observant. Yes it is a private plane. More on that tomorrow.....

20 comments:

Leisha said...

I love you. That post made me cry (mainly because of your explanation of retarded to Lauren...)

Try hard not to get ahead of yourself. Inch by inch, life's a cinch...yard by yard, life is hard (my father's much-repeated mantra...)

Just take it one step at a time. Once you get to those points in your life I don't think it will be as overwhelming as it all feels right now.

As always, thanks for being honest, it gives me strength.

Nellie said...

Today is a great day because you blogged! I seriously have been wondering how you are holding up --It is great to see your little cuties and to hear about what you are up to. I think you are absolutely amazing and I can't think of a better mother/advocate for your children than you.

I'll bet your littlest will have no problem being "main-streamed" in your area. I knew a little girl in PA who was and had great one on one staff, etc. All in good time -- just enjoy the "uncomplicated" baby time -- funny to say that, as usually it is the most complicated! XOXO

compulsive writer said...

Beautiful post. Thanks for the update. I am going to be even more diligent working with my kids to make sure they understand the meaning of the word "retarded."

Best--

AzĂșcar said...

I can't help but feel incredibly HAPPY that your kids have you as a mom. You are so competent, loving, and grounded. I can't imagine the stresses you're dealing with right now, but I can imagine how your children will revere you later in your life.

Karly said...

You know, I am not that bothered by the mentally retarded label either (although I prefer developmentally delayed)...especially when it is the medical diagnosis. I am more annoyed when people use it to demean others, but that being said, I don't really like it when people call each other stupid either.

Lovely post.

b. said...

I thought about you today as I had a lengthy conversation with someone very dear to me.
Some call her retarded....I call her friend.

La Yen said...

I like that Lauren, I sure do.

tracy m (dandelion mama) said...

I love you, too. Really, I do.

I'm so happy you are letting us in again, and I get to visit with you- even if it is one-sided.

You live in a great area for mainstreaming. Ace is going to be fine, I just know it.

Isn't finding help, even rung two on the ladder, such a relief? It lets me exhale.

angie said...

Bek- I am so happy that you are blogging again! I have missed your posts and missed your sweet family. I love how you explained things to Lauren too. There was a cute article in this months New Era about a young Woman with DS. All the girls her age helped her to do activites in each value area- it was a neat story and the girl was so smiley and cute and it made me think of you and your beautiful little Ace!

Julie P said...

You rock star, you. Fabulous post. As was said earlier, your children are incredibly fortunate to call you their mother.

Ana said...

You're doing an amazing job. What a blessing that your kids have you and you have the resources to give them so much help.

I will tell you, the big deal in my house is that we DO NOT use the word retarded (or the word gay for that matter, but that's a different topic) to refer to things we think are bad or people who are not actually in those categories. That's what pollutes the meaning of those words, in my opinion.

Bek said...

I agree Ana. We do the same thing IN OUR HOUSE but I had no idea that Lu was saying it OUT of the house. I need to do a better job...

Thanks for the kind words everyone... it is good to be back.

wendysue said...

Hey Bek! Loving have you back. I agree with Azu that your children are blessed to have you as their mother. A mother that's willing to BE at all the Dr visits and figure out what's going on, and fight for what her kids need.

I also love your new mantra "it is what it is. . " maybe the Dr and nurse needed to hear that. . .Matt's sister went through that same thing when her son with DS was born. . .she could see it and tell and was fine with it (they weren't sure before delivery), but the Drs were almost afraid to say it. She was like "are you looking at the same baby I am? He has downs syndrome!"

Can't wait to hear more from you!!

Anonymous said...

You are such a great mom. Can you please be a mom to my kids, too?

I am in awe of you.

Wendy from Flippin' Sweet

Betina said...

Do you think Nora may have some sort of general Apraxia? This would explain the low muscle tone, gross motor problems and speech stuff... however not the WNL fine motor skills. hmmm. A puzzle.

I am so glad you live in an area with ample resources for your girls. If you lived where I do, you would be up the creek. DOn't move :)

Betina said...

PS - I am really glad you are accepting the State insurance. The idea for extra therapies paid out of your private insurance is going to be more and more applealing as Grace gets into school. Hiring an in-home therapist has worked very well for a family in our district whose daughter has DS.

Queen Scarlett said...

I feel incredibly lucky to know you...and to have had one chance to meet you.

I think we all need to hear this.

Your children with grow, become great men and women and rise up to call you blessed. I totally believe that. Totally. In the meantime... it is what it is will run through my head too. Thank you.

Bek said...

Queen... since you and I live close we need to see each other MORE often..... it is about that time (things have settled down significantly).... should we pick a time? ;-)

Queen Scarlett said...

YES! I'll email you. ;-)

Queen Scarlett said...

ps. To everyone else... in Homer's voice... "jealous"