Saturday, July 12, 2008


It is to early in the morning and I should be asleep but my mind is racing and I feel like I need to unload. If you don't like unloading you should visit someplace else.

When we had Tyler our whole life changed. I honestly wouldn't change much of what has happened because it has shaped who we are and has helped us grow in a way that I don't want to have to experience in any other way. But in a sense it has changed me. Change is not a bad thing. It has made me more aware and I am more in tune to certain things. But it has made me aware of more ignorance than I thought there was.

Some things that I notice are strange gaits in children. Strange eye movements. Strange behavior. "Not Typical" things that a child is doing. When I see those things I give a look to the mom, a little smile that lets her know I get it. I then talk to the child or person and ask how there day is and how are they doing. The mom gets this smile on her face like "I wish more people would treat us the same." How do I know this mom is feeling this way? Because I WANT THEM TO DO THE SAME!!

A little example. One day a few weeks ago me and Tyler were out grocery shopping. Next door to the store is a gas station that has great fountain drinks. Dallas enjoys a surprise soda and Ty loves getting a little cup. We decided to stop. I get Ty out of his car seat and carry him in. I set him down and I fill up three sodas. I balance them to the check out and go back and get Tyler. Pick him up, chatting and smiling and talking to him. Pay the cashier and politely ask if I can leave a cup there and come back in a second. She said "Why don't you have your boy walk? He is old enough." I then stated " Oh he doesn't walk but I will be back in a second." She then proceed to tell me that she hates it when parents make their kid lazy by carrying the all over the place when they should be walking. I look at her and say He CAN'T walk. Trying to get her to see the CAN'T in it. She continues to go on her tangent. I leave. I don't say anything about. I worked and went in later that night and the same lady was there. I told her that my son was not able to walk yet because he of his "issues." I left it at that and she has no longer made any comments including cordial ones when I see her. I see ignorance in this women. I am the same person I was when she saw me before but she doesn't. She gives me this look of pity.

I don't need pity.

I have met a wonderful group of ladies on a Mormon Mom group. Comments are made a lot of how miserable being pregnant is and comments like that are not always hurtful. Just when they start around 32 weeks. We all know my feelings about complaining pregnant women. But the worst was today. A comment was made in regards to a potty training chair. While it looked "different" than any chair you would find at walmart for your typical 4 year old learning to go to the bathroom, this child was OBVIOUSLY handicapped. How did he look handicapped? One he had AFO's on his feet. That in itself indicated that he had some sort of balance issue. But here was this mom making fun of the "device" that is helping one mom somewhere, and maybe more than one mom, reach a milestone of having a child be potty trained. Ignorance again. Why is it that a mom with a special needs child shouldn't be able to feel the joy of a milestone meet just because the device is looked at like a "torture" device? Do you think I like strapping on braces on Tyler's feet that look something like a torture device just to get him to walk or stand not on his tip toes? Why make fun of something like that.

A mom in my ward has a child with Autism and we have several of the same therapists. We, ironically, on our own have become friends and have had a great time discussing the ups and downs of having a child be "special" in our ward. While the gospel is true and correct the people sometimes make me ill. While I realize I am passing judgement, and to some it might seem hypocritical it truly makes me sad for those who are ignorant.

Before me and my new friend had met we were trying to place a face with a name. She asked her neighbor if she knew who I was and what I looked like. The neighbor proceeded to tell her that I have a disabled son who was "mentally retarded." That was how she described me. She didn't say " Oh you know the Chubby lady with short brown hair that wears glasses." No it was the lady with the retarded kid. One, Tyler has no MENTAL anything. Tyler has no issues Mentally. He is Physically impaired. I realize this more than you know. I do. I get that he is impaired. But really.. Don't let your ignorance show through.

The Church has many resources to help those with special issues. Our ward is making a special nursery. But they have forgotten to put typical kids in it. Don't segregate them because they are different. They still need regular social interaction but don't' shove them into a room with 14 kids and wonder why they don't do well. But don't put them in a room by themselves and wonder why they aren't flourishing. They are people who have extra needs but shouldn't be locked into a room by themselves.

So what can you do, what will make us happy? What do we want?
Here are a few suggestions from the Ensign:
Following are some ways to help support parents of those with disabilities:

• Ask parents about their son or daughter. Be willing to listen.

• Don’t dismiss parents’ concerns about their child’s development.

• Don’t expect parents or siblings to “come to terms” with a family member’s disability quickly.

• Don’t suggest that parents were given a child with disabilities because they are so strong. This can prevent parents from expressing their true feelings.

• Make specific offers of help to parents, their child, or their other children.

• Provide physical arrangements in the chapel or classrooms to make members with disabilities and their families comfortable.

• Educate your family and other ward members on the child’s disability, and encourage them to set an example of compassion.

• Bear testimony of the Savior’s love for everyone.

The song in Dumbo says it all.
"If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for
The right to hold you"

Something I can NEVER duplicate in my life is the Spirit of Heavenly Father when I have Ty with me. What a joy he is to me. I love him so much. The ignorance I have felt by so many people who were taught that God loves EVERYONE. That these sweet little babies who did NOT ask to be given these horrific trials carry a spirit that you cannot duplicate. As this sweet amazing spirit lives in my home and I continue with the challenge of teaching him I realize that ignorant people have no right to hold that. They have no right to hold the Spirit that we have been entrusted.

The tears flow as I sit here. I NEVER wanted for my child to struggle. No parent ever wants to see them in pain. No parent doesn't want their child included. No parent would ask to walk through hell to get to enjoy something as sweet and Innocent as a child. What I wouldn't give to have his days filled up with painless days of no therapy and countless appointments. Instead always fun filled days, we get days filled with therapy, doctor appointments and stiff muscles.Not to mention skinned knees because he can't walk but so badly wants to be mobile.

Why is it that you people who are ignorant get to raise "typical" kids? Your typical kids are going to be going to school with my "special" kid. And you are teaching them your ignorance. He has to live with what you don't know and don't bother to find out.

Ignorance sometimes makes the most educated person seem so uneducated.


Aunt Nicky said...

are you ok? if you need to talk, you know my number.. Tyler wouldn't be the Tyler he is without his trials, and he so loving and so adorable. Yes, people are ignorant. I want to say ignore it but I know it is easier said then done.. The people who love Tyler and know the trials makes it so we love you guys even know. I dont know if that helped out any, but I know I love you guys and Nanc, you and Tammy are my heroes! You are my sisters and you have brought these miracle babies into my lives. You have shown me so much. I really have learned a lot from these experiences. I will ALWAYS remember the way I felt when I got to hold Tyler for the first time. THANK YOU! You completely surprised me and it was such a special moment. NOW, as I write this, my tears are flowing. Tyler is my lil man, I love him so much! If you need to talk, I will have my phone! Love you Nanc!

Tiffini said...

I'm sorry that some of our remarks on our group have made you feel bad. I would never want to make anyone feel different. Tyler is very lucky to have you as a mom and he is such an ADORABLE little boy. If you ever need to vent and you don't feel like you can anywhere else I'm here for you. Again, I am sorry for any comments from ANYONE on our blog about anything that has made you feel bad.

carly said...

I hate it when pregnant women complain! I would have given ANYTHING (at the time) to stop Wesley from being going through all he did because of his prematurity. I'd have gained 50 lbs., welcomed stretch marks, sore back/feet, etc. They take it for granted -very often- that they can carry a baby to term. I don't know about you, but I will never be able to carry a baby to term on my own. I wish they'd think before they start complaining.

Jen said...

Nancy. You are a better person than I. I would've gone off on the lady at the convenience store. Sheesh! I'd like to say I'm not ignorant, but I know there are times that I am, but I am trying. I'm grateful for posts like these that open my eyes and help me to try and be better at being more sensitive to those around me and NOT pre-judging. You are a fantastic mother and Ty is SO BLESSED to have you and Dallas as his parents. The world could learn A WHOLE HECK OF A LOT from parents like you!

Daniel and AnnaMarie Miller and family said...

Nancy- I think that the world needs more people like you. I also would have gone off on the convenience store lady! I know how blessed I have been with my pregnancies, and if I complained about it, I'm sorry! I do realize what a blessing it was to be able to carry them to term and that they were healthy... You are amazing ;)

Kez said...

big hugs! and i applaud you for putting this on the net for others to read. so far my Matthew doesn't seem to have any 'issues' but he is only 4 months old so we don't really know yet. I start to feel a panic deep in my gut when I think about if anything will crop up - but you know what the panic is about? Guess..... yup - how other people would treat him. That bothers me most of all. I can't stand the thought of someone treating my little boy differently because of anything to do with his early birth. It's not his fault all this happened. But strangely enough, I get much more anxiety just thinking about how other people might react. I have already been irritated by people commenting that he is pretty small for his age... yes he is - because he is only supposed to be 2 months old! They ask if he can hold his head up on his tummy time (no), if he can sit in his exersaucer (no way, not yet), etc.. and then I feel like somehow Matthew is not a typical child..

But I do get over those thoughts quickly because I have also learned in life that 'you cannot control what other people think of you'. It is very true and I remember those words all the time. Other people may be ignorant to how a family feels about their child who has a few special needs, but I will make sure MY children do not learn that ignorance from me. One of my long time friends has a son with a very very debilitating mental and physical disorder, her son is 5 and cannot walk, talk, or really do much for himself. But he has the biggest smile I have EVER seen on anyone and that is what I always remember about him. I wish other people would think that way, but they don't and there is nothing you can really do about that other than again, teach your own children to accept and understand and love everyone around them, no matter what.

Aimee said...

I don't blame you one bit for being upset. I can't even imagine someone talking down to me like I was a bad mother. I think she would have deserved a black eye! Next time do it!!!!

Kellars Mommy said...

Wow! I must admit I am sitting here in total shock over several things that have happened with you! I too think that you are a much stronger person that I am, I would have flipped out on more than 1 person you speak of in your post. You are so right, the world if full of ignorance, it's full of people who take little things for granted, it's full of people who could never handle one day in our shoes, it's full of people who want to look down their noses and judge you for the way you parent your child. I know that I have it good compared to some, but do I take that for granted, no b/c I also know different. I see Kellar has a different gait, but while noticing the differences I also take pride in the fact that he walks. Kellar can't jump, but he tries, he thinks he is and that to some may be nothing to smile about but when I look at my child stomping his feet and thinking he is jumping I am the proudest momma in the room! Pregnant women-I honestly cant' stand to even look at one, after I lost Cameron I would just freeze when I would see one, my chest would feel so heavy. Since having Kellar at 26 wks I despise hearing one complain of how miserable they are, how ready they are to have it. I would have done anything to make it to at least 36 wks when they planned on cutting my stitch..I could go on and on on that subject..Tyler is a amazing lil boy and don't ever let anothers ignorance dim all that he has accomplished..

liz.mccarthy said...

what a lovely post Nancy. Just lovely and so heart-felt

being pregnant again myself, it's still so amazaing hearing women complain. I just started getting some pregnany reflux and it makes me smile and giggle. How about that for 'embracing' being pregnant and in my third trimester.

Writing from my hospital bed...

Liz M