Disability Awareness month

Three years ago our lives changed for the better but it forced us into a world of different. Some times I don't know how different we are till we get into a room full of other 3 year olds but when that happens I know we are different.

The slogan " different is good" isn't always how you really feel. Maybe for your choice of fast food but when you want to be like everyone else different is kinda ...different. The hard part. I want to be included in the same things but know how hard it is for others to include us knowing we are different.

In church we had a hard time sending Tyler to nursery because he couldn't take his walker because of all the other little kids he would potentially be knocking over but consideration wasn't take that that was his only way to move like the other kids

When we would go to the store people would notice stare and yet never EVER catch my gaze. They would avoid holding a gaze. I KNOW it was on purpose because I would stare right at their face.

Now that we are older and I still carry my preschooler we get comments. An example: We went to the gas station and we were getting sodas for 3. I had Tyler with me so I was also carrying a preschooler. A guy came in and said well maybe he should carry his own and walk. I smiled and said thanks but he can't.

A year ago that would have left me in tears. Now, I recognize it as an opportunity.

This is what I have learned:

People are curious. They don't mean it rude but people want to know why your kid is the way that he is.

People never know how to approach and ask. Who knows if the person even wants to be approached? What if it was me a year ago. I would not have been the wiser and known it was a chance to teach and educate.

People don't know what it feels like so they say things that may be offensive. Again an education thing.

So my plan of action of how I plan to teach my child and others around him:

1. For my child. He can do what ever any one else can do. I may have to find alternative ways to help him but he can do it. We may be slower at doing them but with a little help and patience on my part he will show me he can do it. I expect that of him. If we expect them to be different they will be.
2. Take the time to educate when someone asks questions. If a comment is made explain WHY they can't walk. If a comment is made as to why something is offensive try to explain why a comment like that would hurt someone else. And let others ask questions. Sometimes they just want to know and have no way to ask.
   
3. Teach other smaller children at the playground or other places that all though they can't physically do something they can DO something. We just might have to find something that they can all DO together.
   

So after 3 years I have learned a few small things.
I have also learned that love heals a lot of things.
I have learned that ignorance happens even with the best of intentions.
I have learned that life is a matter of moments that take our breathe away. Cherish each one regardless of how "able" we are. We are all "able" to love.



For more ideas on how to talk to your kids about disabilities go here.

The do's and Don'ts

Last year during our prematurity awareness month I posted a few do's and don'ts and got a lot of laughs and comments so I thought I would share for those newly googling NICU parents.

First the Do's

1. Ask me what I want to be called.I may or may not want to be called "mom." I would like to be called by my first name.

2. Send me a Polaroid of my baby when I can't get out of bed because I have had a C-section OR take pictures when I am not able to be there. For Tyler we had a disposable camera in his drawer all the time. LDS NICU also took pictures of them when we were gone.

3. When referring to my baby, please don't call him "your baby" (as if he is your baby) or "the baby." He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name. ( this was huge. The Nurses would get use to having Ty..But he was still MINE!!)

4.Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)

5. If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.

And some DON'Ts....

1.Don't Call me "Mom." Please ask me what I would prefer to be called. ( I didn't care so much about this one. I had Primary nurses that I just loved and they knew me after a day or two...but for some .. I am sure it was an issue.)

2.Don't Move the baby without telling me ahead of time, or at least meeting me at the door. ( when you get into the habit of having them in one spot going in and seeing your baby not in your spot is a little overwhelming. Ty was "kicked" out of his corner it was REALLY kinda nerve wrecking. Change during that time was SO hard.


3.Don't Tell me how I should be feeling or that I "need to be patient." Even now hearing that it is "normal" is hard to hear. It is something we are dealing with. Not you. You have NO idea how I feel.

4.Don't dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes. Having a sick baby was so different. You can't touch them or love on them like a healthy baby. Holding took a long time and he was sick. On some days he was sicker than others but he is my baby.

5. Don't assume that I don't care for or love my baby if I don't touch him. I may be very scared or overwhelmed. The first time I saw Ty I wanted to touch him but I remember being told not to rub. There were days when I was told not to touch him. But there were days I couldn't touch him. I was sad. I was scared. He was so precious but still so sick.

*These were some things we had posted on his incubator. I am sure they weren't read but I wanted them there. I wanted them to know that I had feelings and that things did effect me.

The do's and don'ts continued!!

I had no idea that the list would be so popular. There are TONS more. Some I didn't have issues with but there were and are a few that I am so glad we had on there. So I thought I would add a few more to the mix and add a new CUTE preemie picture to the top!!

1.Do Make a cute name tag for my baby's bed. I still have Tyler's and it meant a lot to me that he was no longer Baby Boy Brown. He had a name for a reason. One of the only things that I liked about having to be transferred was to be admitted under Tyler Brown and not BOY!!

2.Do Tell us when I can speak with the doctor. As Ty's parents we liked to be able to hear it all from the "horses" mouth so to speak. We needed the information from the source instead of a go between. There was one nurse practitioner that I could have done without and happily put that in my care plan but other than that.. Let us speak with the Neonatologist.

3. Do Promote attachment between parents and their babies. Show me that you are confident I will not cause my child any harm. That was huge. I was so afraid I would hurt him in those first few days. He was so tiny and so fragile. But after they burned his belly I wasn't to afraid any more. ( yes you read right.. they burned a hole in his belly and he still carries the scar) I wanted to help them so badly but they wouldn't let me.

4.Do Tell me how to read stress cues so I know the best time to touch my baby and when to stop. This was helpful. I enjoyed learning about this. I was able to read Tyler very well by the end of our stay and I knew that he enjoyed us touching him.

5. Do Show me how to do things that I can do to help care for my baby. Let me change his diaper. Show me how to bathe him. Show ME how to do all I can for him. He is mine. You are there in MY place. Also keep encouraging me to pump and provide milk for him. It helped so much to have the Nurse thank me for giving him MY milk and telling me I was doing him a great service.

6.Do Realize that once I am able to do some kind of activity for my baby, it is really stressful to have a staff member decline my doing it because they are unable to help. We became pro's at seeing the needs of Tyler. I remember one day we were lowering his oxygen( which we had done TONS of times before) because he was in the 100's and beeping. We lowered it a little and went on our way. A nurse from across the room came and got mad at us. This was right at the stage of finding ROP and we didn't need him to be over oxygenated. I was so angry since our own nurse had allowed us to change his needs. We were his parents and wouldn't do anything to hurt him.

7.Do Acknowledge when we do things correctly, praise us, thank us! Lisa was great at this. She was always more than happy to let us do things on our own and then thank us for changing a poopy diaper. She was always so good to Ty.

8.Do Tell me how to touch my baby in a developmental and soothing way. I loved our OT at PCMC for teaching us so much about Ty and how to help him calm himself. She taught us so much about his need to be swaddled and encouraged us to hold him.

9. Do Allow me to hold my baby as early as possible-it is the best part of being a parent. We didn't get to hold Tyler for 3 weeks. They were admitting a baby the first day we were told we could hold him. I was so angry I left screaming at the staff. The next day they had just got done admitting one so I was able to hold my precious little boy. It took several staff members but it was well worth it. Both of us held him that day. From then on when he did so well we were encouraged to hold him every other day. Soon we were transferred and holding was encouraged all the time. And every day is what we did.

10. Do Help me to do Kangaroo Care as early as possible. Please check on me during this time to make sure I am okay. We actually never did actual Kangaroo care. One time I went there in between classes at school to pump and the nurse asked if I would try it. We were starting to get Ty to eat and she wanted him to taste my milk and she wanted to see if it would increase my supply. Other than that one attempt we never did it. BUT he wasn't lacking in the holding department. We would have to decide who held first. It was the best time of the day.


The DON'Ts

1. Don't Tell me my baby had a bradycardia because I was touching him, feeding him, or doing something wrong. It hurts our feelings and makes us feel even more inadequate as their parents. We have to leave our child there with you because we can't take care of them. We have enough guilt. Be gentle with our feelings.

2.Don't Please never treat me as if I am stupid. All of the medical terms and information are very difficult to understand and comprehend at times, especially since I am probably feeling a tremendous amount of stress. I was lucky to have some medical knowledge so when I read the notes or listened I knew what they were talking about. However, I am not attesting to be a doctor. Know that when you use the big words we WILL GOOGLE and we will find out what you said and we will not always be happy. Treat us as if you would like to be treated.

3. Don't Write harsh judgements about me in the nurse's notes, unless the information you are recording is known to you without question from both observation and communication. We were lucky about this one as well. Our Nurse was fabulous. I loved once we got primary nurses I KNEW who would be there and what care he would get.

4.Don't Assume anything about me or my family if we are unable to visit regularly. My family may be very loving and supportive, but cannot come to the NICU for other reasons. We had such a willing support system. Me and Dallas however, very RARELY didn't make it up. One of us was there every day. I think in the 93 days of our stay we missed 2 days. One was surgery day for me and one we just needed a day with each other. We were both pretty down. But if one was down one was usually up at the hospital. Our parents made it as often as they could.

5. Don't Sound annoyed or make insensitive comments when I call to check on my baby. The phone is sometimes my only connection to my precious baby. I had NO idea that the times I called it was written in his chart as family interaction. I was a avid 2 hour caller. If I wasn't there I was calling every 2 hours ( except at night)but it was the first thing I did in the morning ( even before hitting the bathroom.) I would tell them when I would be there and I would call 2 hours later. Poor nurses.

6.Don't Do the tasks that I have already been doing (bath, diapers, feedings, etc.) if you know I am on the way to the nursery. It takes away what little parenting I can do. This was huge. We LONGED to do the cares for our child. If you knew we were coming.. We promise he can wait.

7.Don't Act as if breast-feeding is not crucial for my baby. There is enough scientific evidence of its importance to preemies that it should be encouraged to breastfeed. However, if I am unable to produce milk, please do not make me feel inadequate by comparing me to all the other mothers who have no problem with lactating. Lucky for me our lactation lady was around alot. I didn't produce much milk but I pumped, and pumped and pumped. I felt horrible for not getting enough. BUT he had a freezer full and he had fresh stuff while I was there. I personally feel it is important for him to get it. Next baby... Feeding till they are 8!! ( ok not really but for as long as I can!)

8. Don't Talk loudly or keep the lights on unnecessarily. Again not a huge thing for us. They had the lights down at night and they did their best to keep it quiet.

9. Please be careful to not share information about a baby with the wrong person. Please check and double check that you have the correct information with the correct parent. We had this problem when we were readmitted the first surgery. We shared with a baby named Taylor Braun. Our name was Tyler Brown. A little to close for comfort. But I can tell you that the sound proof curtain DOES NOT WORK!! But we were happy to have Erin and Maeve on the other side. That way we always had someone there!

10. Don't Talk about a baby in a negative way when the parents are gone. It is morally wrong, very unprofessional, and may also hurt other parent's feelings (wondering what they say about my baby when I am not here). Again the staff we had were wonderful. I did overhear a few times that Maeve ( Tyler's girlfriend) needed some onsies and to call mom so we just Loaned her some of ours. Ty didnt' mind and he Loved her :) Our staff was wonderful.


Trust me ladies.. there are lots more.

If any preemie moms or other readers have specific things they would like to see or ask some specific questions about prematurity.. By all means PLEASE let me know. Leave a comment or Email me!!