Adventure Time With Addison Rose

Hello Tumblr. I’m going to be revamping and reviving this blog. I haven’t done anything on it in YEARS. YES, YEARS. But, it’s about time I got back on the ball. There is a lot about Addison to talk about. SO BUCKLE IN and ENJOY.

If anyone is a Switched at Birth fan, then you know in the new season, Lily is having a son with Down Syndrome. As much as watching it hurts, it is as honest as it gets. 

When receiving a pre- or post-natal diagnosis of Down syndrome, it is so much more than a diagnosis. People want to tell you about all the wonderful things about DS. People want to tell you the horrors. They want to tell you not to keep the baby. They want to tell you everything they know about Down syndrome. It is an emotional roller-coaster that feels like you’ve been hit by a parade of steamrollers. 

There are milestones that every mother prays for to come. The two HUGE ones are potty training and the transition from the bottle to cups. It is more so that we have less work to do on top of our other motherly duties. Yes, walking and talking are major but they are not as liberating as the two aforementioned milestones.

For almost a year we have been trying our hardest to get Addison off the bottle. We have had set backs. The few times she had gotten sick we gave her a bottle for her pedialyte so she could lay down comfortably and relax while being hydrated. Each time, we had to reteach her how to drink from a straw. It took a few days but she got the hang of it. 

Addison had her adenoids removed two weeks ago. Her post-op directions stated no straws for 2 weeks. When I read it, I instantly thought, “Dear God, again?”

With a few days left on her “no straw ban” I decided that enough was enough. Doctor Brown’s Bottles are a pain to wash. I love them but DAM, they have so many pieces and it takes two dish washer bottle holders to wash them all (so that I feel they are properly cleaned).

The first day of no bottles was a success. She didn’t even seem to care. It was a little bit of a mess. She had to get used to the straw again. I made it a rule that she HAD to sit in the high chair while she drank her milk or juice or whatever she wanted to drink. Addison thinks herself an artist and her medium is liquid on furniture. The goal is to get her used to DRINKING and not DRAWING.

Today is day 4. Last night I threw out all but three bottles (as per request of Daddy for just in case purposes). I think we will be tossing those, too, in a week or so. She even learned how to drink out of a 360 cup. It barely took any real hardcore teaching on my part. I just showed her that there was liquid in the cup by lifting the seal. After that she figured out if she sipped the liquid would come out. 

Mommy- 1 Bottle- ?. I may have not won ALL the battles BUT I will win the WAR!!!

This is a rant.

One thing I do not understand is parent bashing. We all have our own views on how to raise a child properly. If another parent’s parenting style is different from yours then well, that’s their right. As long as there isn’t abuse, that is perfectly fine. 

I know I scoff at the parent who gives into their toddler’s whining and buy the item they repeatedly said no to purchasing. I don’t say anything. I don’t know what their home life is about. It might just be a rare occurrence. I am not about to make a scene in the middle of a store by scolding a parent about their parenting style. Now, if this is something I wouldn’t do in public, then I sure as hell won’t do it on social media.

So, WHY do parents feel the need to sit behind a computer screen and bash a parent about how she parents HER child. I commend this mother for handling it with grace and dignity. She is open to showing her child to the world and knows it has it’s consequences. It is her choice to show what life is REALLY about raising a child with Down syndrome. 

Is it that parents don’t want to face the reality? Our kids can be difficult like ANY child. All we hear is how “happy” people with Down syndrome are from people who meet them in passing or through friends or whatever it may be. “Oh I knew a kid from my neighborhood who had Down syndrome! He was the happiest kid in the world!!” I heard just about every parent exclaim how they know when a parent complains about hearing that line from a stranger who meets their child. Our reality is that our kids aren’t immune to emotions. They have real emotions and sometimes they are stubborn or grumpy or happy or playful. They are REAL. They are HUMAN. 

Why is it so hard to keep the negativity out when we disagree with how a parent raises his/her child? Let’s try to stop parent bashing. We are a community of many races, genders, ethnicities, and socio-economical backgrounds. What we have in common is the pure love of having a child with Down syndrome and our drive to show the world how to accept that child the way we have. 

I just don’t understand some of these parents who act childish about conflicting views. 

There are a group of parents who question why we celebrate World Down Syndrome Day. So, here is why I celebrate WDSD. This is why I celebrate Down syndrome PERIOD.

If we were living in well any year pre-dating 1951 most people with Down syndrome would be living in institutions for life. Now, instead of coercing parents to send their child away you find doctors coercing parents to terminate a pregnancy that has been diagnosed with Down syndrome. As if that is any different? 

We have come a long way as a community but we are not finished. I fully believe that it is a woman’s right to own her body. I do not believe a woman should be given bias information. If we don’t take the time out to recognize our children and their accomplishments then how will parents, who are in the shoes i was in two years ago, know that there is a life after a Down syndrome diagnosis. The abortion statistics are so high because wrong information is given out. Fear and ignorance dictate what doctors tell parents their child will probably never do. My daughter walks. My daughter feeds herself, it is messy but she can do it. Addison is only 20 months old and she can do so much more and will do so much more. Where are these statistics when doctors are striking fear into the hearts of parents who want nothing but the best for their child. There are doctors who say abortion is the best option because there is no quality of life for that child. 

We also have to think about it’s not just our kids with Down syndrome we are celebrating. We are celebrating those who fought before us and their children. We work hard for our kids. Sometimes we work so hard we want to give up because we feel like its going no where. There were people before us who fought tooth and nail to make these services available. People who put their everything into giving their child a better life. They didn’t have Early Intervention. They didn’t have feeding therapy. Infants with disabilities didn’t have one on one paraprofessionals. They made this all possible. Our struggles have been made easier because the generations before us gave a dam to fight for it. They deserve our respect. Their children deserve to be celebrated because without their existence in this world, we would not be where we are. We would be in the dark ages of acceptance. 

On World Down Syndrome Day and every other day, I do not just celebrate my wild bundle of engery. I celebrate the generations that came before us and the generations that will come after us. One day there will be complete and total acceptance. That will be the day I can say we are where we need to be. Like I’ve said, we have come a long way from institutionalization but our mission is not complete. The world needs to know that our normal is the same as theirs.

This little face is what started my journey.

Her drive to do amazing things is my reason to fight for her.

My little girl does amazing things and I want the world to know.

Plus, she is a total ham who is always willing to strike a pose for the camera.

I haven’t posted in a while. Partially because we have been very busy. I also haven’t had much inspiration to write. But today I come to you, people of the internet, with some things I feel you should know.

1. Down syndrome is black and white. There is no spectrum for severity or “how much” Down syndrome a person has. While there is mosaic Down syndrome, where the extra genetic material is only present in a percentage of cells due to the chromosomes not splitting properly in a cell after conception, the child still has Down syndrome. When you say “Your child doesn’t look like they have it that bad”, while you’re intention are well placed they are wrong an can be hurtful. It is like telling someone who has hazel eyes “well it doesn’t look like you have hazel eyes that bad”. Sounds ridiculous? How can someone’s eye color “not look that bad”? It’s the color they are genetically coded to have. Same goes for people with Down syndrome.

2. There is no miracle cure for Down syndrome. Researchers are trying to figure out a gene therapy to mute the effects of the extra genetic material. It’s kind of like muting the television. You can turn off the sound but it is still there if you turn in back up.

3. People with Down syndrome have a lot of emotions. For example, if I walk out of the room and Addison is tired, she will scream and cry until I come back. I could be making her a bottle or using the bathroom but she doesn’t care. She is upset because she wants her mama. Like all babies, there is a stage of separation anxiety they go through. This is true for children with Down syndrome. Just because you know someone with Down syndrome who is a generally agreeable person when you see them does not mean everyone with Down syndrome is the same way. We are all human. We all experience different emotions. Some more than others!!

4. Yes, there is prenatal testing for “that”. Did everyone have it? No. Why are you prying? Sometimes parents are blindsided by a diagnosis. They never thought this was going to be their life. I had a prenatal diagnosis. Yes, I kept my baby. I kept her because I loved her from the second I knew I was pregnant. I loved my genderless little nugget from the second that pregnancy test was positive. That love was not changed because she would be different. That does not make me a saint. That makes me human. I have feelings despite what people might think. Point being, yes there is testing for Down syndrome. Do we all do it? No. Do we want to relive that experience? No. It took me a long time to not cry when talking about my month+ long experience with prenatal testing. So please, keep that question out of your mouth when it creeps up.

5. Lastly, every child, typical or not, is different. They all learn differently. They all develop differently. They grow and all that jazz differently. Sometimes parents of typical children forget that. Their baby is doing something so to them yours should too. “Is she walking yet?” Isone of those questions that stab at the heart of parents of a child with a gross motor delay. Gross motor are motor skills such as walking, crawling, or sitting. I was lucky that Addison walked at 15 months. I feel like a douche sometimes when I meet other parents with a child with special needs and they ask me how old she is. At 18 months Addison does do a lot we didn’t even expect her do to at her age. But we still face delays. There are areas where Addison excells and others she is behind. Like any child.

I hope my late night rambling makes sense or entertains some people.

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