Thursday, January 29, 2009

There are Hard Days

I have discovered in the last couple of days, that even though I love the journey we are taking because of Nichole's diagnosis, there are still some days that are hard. Actually, there are days that are very hard.

We are currently in the process of applying for an MR waiver. MR stands for Mental Retardation. That is right, we are basically in the process of applying for a waiver that will label my daughter as mentally retarded for the rest of her life.

Why are we doing that? Because this is the only waiver available in which she can get the services that she is entitled to. If we chose the other waiver for which she would also qualify, we might have to wait for two years! We have heard from some providers that things might change, and if she is not in a waiver soon, she might never get it.

In the "race" of time, there is no waiting list for the MR waiver. Can you believe that? Nobody is in line waiting to be labeled as mentally retarded!

Why is this so hard? Because nothing, nothing, nothing in me wants to give her such a label. I cringe at the thought of that. In order to qualify for this waiver, she has to have a psychological evaluation. This has taken us down the road of case workers, interviews, and developmental charts. Because I want her to qualify, I have basically painted a picture of my daughter that is not accurate, not because I have lied, but because all I have done is talk about all the things she cannot do and the things she has trouble with. Nobody has taken the time to ask about her abilities, but rather her disabilities.

I cannot even type this without crying. I have not only spent the last few days talking about the things that she cannot do, but I have really stressed those out. I have made it clear to everyone I have talked to that she is delayed in all areas of development, so why do they keep calling and asking more questions? What kind of advocate am I? I am passionate about teaching people about the beauty of Down syndrome, about all the wonderful mysteries I have discovered. I am passionate about showing people that the life of a child with Down syndrome has worth, value, and immeasurable meaning. But here I am, painting a stereotype, affirming it, all so that she can get the services that she deserves.

It has been hard on me. As a mother you can only do this so many times before your heart starts to break and you want to call it quits.

My child is NOT retarded! She is perfect! She has so much potential! Leave me alone!

I do not want my child to be called retarded, I hate that word, it is a word that is used flippantly and it hurts, this really hurts and most people don't understand what they are saying when they use it! People use a word that now will be used to describe my daughter in order to make fun of others and point out their flaws.

I hate the word retarded because of how it has been used. I hate it.

And the tears come fast.

Nichole is beautiful, she is smart, and her life has great value!

So here are the things that Nichole CAN do.

She can crawl, fast!
She can babble like no other! yah, yeah, hi, da, ma, pa, ba, bo, la, are some of the sounds she CAN make.
Her receptive language is very good and she follows commands and responds to signs(except for obeying when told "No" then she acts like she has no idea what we are saying)
She has about 15 signs (she does not always sign them, but she does understand them all)
Her social skills are above and beyond.

And there are so many more things she can do. Which makes it so hard to be going through this process. Yesterday was a very hard day. I realized, that other than initially dealing with her diagnosis, this has been the hardest thing I have had to go through with Nichole.

I feel like I am betraying her in some way, giving her a label that is repulsive to me, giving her a word that is sued in such a mocking and disrespectful way. I know this is what I have to do for her, I want her to be taken care of! But it is so hard, so hard for this mom.

I cannot wait for this process to be over with so we can just move on.


  1. Hugs, friend!

    You are such a good mother to your girls.

  2. Oh Ellen, I ache with you in the little way I can. I can only imagine how hard this must be. Thank you for sharing and for being honest. I'm praying for you! Love you lots friend!

  3. I remember feeling so many of these same feelings when going through the process to get Lucy on the waiver. It feels like such a contradiction, but unfortunately it is a necessary evil. I guess I just thought of it as "I have to do what I have to do" because in the end it was best for Lucy. We were able to get her services that she needed and will need in the future. And it stinks that the system sort of makes you feel like your selling out your child, but you're not. You are advocating for her. You're not saying that she is a hopeless case. You're not writing her off. You're getting her services that she needs because she has a condition that necessitates those services. (I know you know this, I just like to give little reminders! ;) )

    I hope you feel better soon. I hope the process of applying is behind you soon and you can move forward with Nichole's services in place and just focus your energy on watching her grow and develop!

  4. Dear Ellen, My heart aches for you, especially when we all hate the "R" word used with our God-given children. JM's therapist told us that, while they prefer to say cognitive delay, the government still uses the "R" word for diagnoses. You are doing this for Nichole out of great love for her and doing your best to make sure she is taken care of later in life. The pain and sorrow you feel are BECAUSE you love her so much. You're a great mom. Take a deep breath -- it'll be a better day...

  5. I'm sorry that you feel that you must be in such a hurry to do this and the pain that it causes. There are many things that our children are capable of doing in their lives. Did I tell you of the girl with Ds that was a nursing student in our hospital? I was really surprised to see her there, but there she was - learning and seeing patients with the rest of her class. I realize that every parent must do what they feel is best for their children but I wonder how much of their future is limited by the labels that we place on them.

  6. Anonymous3:40 PM

    Where is your faith? Reviewing your post you mentioned yourself (I or we) 36 times but not once did you talk about your faith in God. Interesting. When the going gets tough, God doesn't abandon YOU, but you seem like you've abandoned Him.

  7. Oh Ellen! I don't know what you're going through, but I can just imagine a little about your pain. While reading your post, I was crying to see all the pain you and your family are going through. I know it's a very hard and difficult decision.
    But please do not feel you're betraying your daughter, cause your "labeling her". You are doing all you can, as mom, to ensure her future. I know that some day she will understand how hard was for you to take this decision. And she will understand that you never ever thought and will think she is mentally retarded. This is not your fault, it just that our society is not yet mature enough to understand Nichole and to change enough to make a big difference.
    From Mexico, all we love you are accompanying you into this trip, and you and your family can always count on us. I send you and you family hugs, and kisses for you and Nichole. I love you!

  8. Ellen, This is Joyce. I so understand where you are. I've been down that road so many times. Just as I thought I had finally gotten used to it, Sarah turned eighteen and we had to apply for guardianship so the doctors would talk to me with the new HIPPA laws. In that hearing they never used the R word, but rather "incompetent". That was not any easier.

    In the end though, I would follow the money no matter what label they put on it if it was going to provide needed services. Sarah is currently number 1,987 on the wait list for a waiver in our county. They move about 20 a year off the list, so we will be waiting for a long, long time.

  9. Wow, Ellen, I had no idea you were going through this. What a rough process. It makes me really hate (probably shouldn't say that) the government! Thanks for sharing and being so open. I don't know how you could have shared without using "I" or "we" so I don't know what Anonymous' problem is. Praying with you that you'll do the right thing!

  10. Ellen, I am so sorry you are going through this. Here in Connecticut, the Ds diagnosis is enough to get us the services we need through Birth to Three and later the school district. I don't think I would be able to give John an MR label just yet, but I would if that was the way for him to get the services he needs. My goodness, at 2, who knows what he will be capable of.

  11. Thanks for sharing this Ellen! Wow, what a journey you guys are on. It sounds like what you are facing is a rigid government system that isn't set up to protect and advocate the beauty of life in all its forms. Surprise, surprise, right?

    By the way, our 17 month old acts like she doesn't understand "no" either, so Nichole is totally normal there!

  12. Ange A.10:55 AM

    I wanted to leave a comment about this as a friend who has given respite and SCL services to others. I know to you it may seem like a bad thing, and that's what makes you a good parent. A good parent longs to not label their child as anything but themselves. But let me reassure you that this is one of the best things you could ever do for your child. In some ways, those children with these diagnosis get better things than "normal" children. Nichole will now have several people involved in her life who wouldn't have been without this opportunity. These people will love her and care for her and push her to be more, to do more. These people will push Nichole to be the very best that she can be. Oh, that we all had such people in our lives!


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