Be careful what you wish for...

      Cooking dinner I noticed food flying through the air across the kitchen. I look over at my dark hair beauty as he was having a BLAST throwing his food across the room. I remember a few months ago when we were doing an evaluation and Mason wasn't able to hold a toy, a therapist asked if he was throwing yet. I said "No I wish!" I only said that because at that time he wasn't doing much physically. She told me that is one of the biggest complaints from parents because kids who have downs suffer from sensory processing  Because their muscle tone is poor, they do not ‘feel’ their body properly. They get a sense of joy out of throwing or hitting. She continued to tell me how they are not doing it to be naughty and they don't care what they throw. As I'm watching Mason pick up his food with those short chunky fingers and chuck it across the room I remembered all to well the reaction  of the therapists when I said " I WISH!!" 

      Besides Mason sitting so well in his high chair, able to feed himself we have also noticed ALOT of noise coming from his way. His recent thing besides throwing food is banging on his high chair tray REALLY hard. His grabbing is strong, his hitting is hard and boy does he have an arm of him. Baseball perhaps? 

     To help Mason and his lack of sensory we introduce him to different textures...rocks, sticks, sand, I crumble crackers on his baby food or applesauce, and I continue to give him full body massages. Also with that our little guy is now being taught "NO Mason!" 11 months old and just now teaching him a mothers most known word. 

Q and A

I have been asked several questions in the last 11 months I decided to answer them here.

How did you find out Mason had downsyndrome? F.I.S.H test was done after he was born

Did you know Mason had downsyndrome when you were pregnant? No not 100%

Would you ever consider an abortion if you knew? ABSOLUTELY NOT

Has your life changed since having a baby with special needs? yes  My life is more scheduled around doctor appointments, therapist and working with Mason and I have more fears and questions then I ever have.

Would you ever put Mason in a care facility? NO Mason will always live with his family.

What kind of health problems does Mason have right now? Sleep apnea (needing oxygen), reflux, heart defect ( needing 6 month checkups)

Is Down Syndrome inherited? The majority is not inherited.

Will Mason be able to live on his own? Well not real sure. I have read about adults living on their own with help. Mike was talking about what kind of person we would want to help Mason if he lived on his own and I told him that wont be necesarry his mom will be helping him. :)

Whats Mason like? A normal sweet baby. Loves to be loved, played with. Is shy with strangers the only people that can hold him longer then a couple minutes is Mom, Dad and his therapist Miss Mary.

How do you handle a baby with special needs? Im sure as he gets older I will have to deal with fighting for Mason to get what he needs with school, will have to deal with bullying and so on but as of right now just focusing on his health, and working on his gross motor skills, speech, and fine motor skills and spoiling him more then ever!!!

Other parents rather not discuss their child who has Downs why are you different and open?  I'm not ashamed of Mason because he is unique. I understand people have questions as long as they arent aimed negatively to me or very judgemental I have No problem answering.

Does Dylan know his brother was born special? Dylan loves his brother and thats all that counts. As he gets older if he has questions we will be open and honest. He did ask why all these people come work with Mason and I told him that he needs a little extra help and they are teaching mommy how to teach Mason how to do crawl, walk and ect.

Does having a baby with Downsyndrome add stress or affect your family relationships? Actually no not for our family. Going through challenges, and this journey alone being away from family and our family not having gone through any of this has made Mike and I rely on eachother. Doesnt affect Dylan we make sure he gets all the attention he did before. When Mason has doctor appointments or therapys I put Dylan in daycare to play or he is in school so his life doesnt circle around his brother. As for me Im an army wife, soldier is gone more then he is home so I do all the appointments alone which made me strong, and very appreciative for the little things.

Does anybody else in your families have a disability? No.

How did you take the news when you found out Mason was born with Downs? I cried like a baby, was overwhelmed, worried, scared, didnt know what to expect.

How do people get Downsyndrome? at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 - for a total of 47 chromosomes instead of 46. It's this extra genetic material that causes the physical features and developmental delays associated with DS.

Your a young mom I thought older parents were at higher risk of conceiving a baby with Downs?


Maternal Age Related Risks

I was 26 when I had Mason! 1 in 1,176

Mom's Age	Risk for trisomy 21 (Down syndrome)	Risk for all triomies
20	1 in 1,667	1 in 526
21	1 in 1,429	1 in 526
22	1 in 1,429	1 in 500
23	1 in 1,429	1 in 500
24	1 in 1,250	1 in 476
25	1 in 1,250	1 in 476
26	1 in 1,176	1 in 476
27	1 in 1,111	1 in 455
28	1 in 1,053	1 in 435
29	1 in 1,000	1 in 417
30	1 in 952	1 in 384
31	1 in 909	1 in 384
32	1 in 769	1 in 323
33	1 in 625	1 in 286
34	1 in 500	1 in 238
35	1 in 385	1 in 192
36	1 in 294	1 in 156
37	1 in 227	1 in 127
38	1 in 175	1 in 102
39	1 in 137	1 in 83
40	1 in 106	1 in 66
41	1 in 82	1 in 53
42	1 in 64	1 in 42
43	1 in 50	1 in 33
44	1 in 38	1 in 26
45	1 in 30	1 in 21
46	1 in 23	1 in 16
47	1 in 18	1 in 13
48	1 in 14	1 in 10
49	1 in 11	1 in 8

 

How do you know?

I am constantly asked...How did you find out Mason had DownSyndrome...

After Mason was born they did a F I S H test.

to determine if there are three copies of the 21st chromosome which is done by fluorescence in situ hybridization (FISH). This is a very specific test and will only look for specific genetic differences. Examples are FISH for Trisomy 21, 18, or 13. There are several other FISH tests, but your child would only have the one for trisomy 21 at first.  

Maon has mosaic trisomy, the misdivision occurs after fertilization at some point during early cell division. Because of this, people with mosaic Down syndrome have two cell lines -- one with the normal number of chromosomes, and one with an extra number 21

Mosaic Down syndrome do not have the extra chromosome on every cell. They have a "mosaic" of affected and uneffected cells.

Children with Mosaic Down syndrome may have higher IQs than those with Down syndrome, but many of the health and development issues are the same.

One and Two and Three and Four

      When I watch Mason do physical therapy, hear him grunt as some things are harder then others, whine when hes had too much reminds me of watching someone at the gym. Physical therapy isn't a workout but to this small 10 and half month 19 pound boy its a work out and exhausting. Hyptonia is low muscle tone. All children with Downs have it. Doctors, parents, books Ive read say kids who have Hyptonia are "Floppy" or like "Rag Dolls" or a "Wet towel" I would like to say I very much dislike the idea of my child being called any of these things. He was born with Hyptonia low muscle tone end of story sometimes its better not to compare. Mason gets tired VERY easily and has to work REALLY hard just to do small things like sitting in a highchair, lifting his hands above his head, feeding himself, holding his bottle or even crying a couple minutes he wears himself out. With hyptonia Mason needs therapy to strengthen.
      Physical therapy is important and has become one of my favorite times of the week. Seems silly but to welcome a lady in my house who loves and adores my baby,watching Mason grow week to week is more then a job to her, his therapist has become Masons coach, cheerleader, teacher, but mostly friend someone I trust and welcome in my home with a smile.
      Every week I greet her at the door the same day the same time, She asks how our week has been, washes her hands, Dylan hugs and talks to her then she tells me how much Mason has changed. Every week we work on different things.
      I couldn't get Mason to be interested in feeding himself or even holding food. His therapist asked me to try Mum Mums they are thin, wide, long and melt. The first couple times it took a while to wrap those short, chunky fingers around it. I would do the "hand over hand" method as the therapist would call it, showing him how to do it several times. The following week I told his Therapist I had to show her something. I put him in his bumbo and handed him a mum mum. She looks at me then looks back at Mason with a surprised look on her face. He reached for the mum mum, grabbed it, and bit it off like a potato chip. She couldn't believe it. He sat there and ate 2 mum mums like a pro. He didn't slobber, or choke he sat there like a big boy eating his mum mum. He goes through a box a week and that was the start of him feeding himself. Now I can put chunks of food (meat,fruit,veggies...anything) on his tray and he feeds himself.
      Through out the week if there is something we work on during therapy and Mason accomplishes it I record a video and show it to his therapist cuz hes not ALWAYS in a show off mood when shes at my house. We were talking yesterday about his growth, strength and change from the time we did the evaluation. She said she cant wait for the next evaluation everyone will be impressed. Mason has worked REALLY hard. After every therapy session Mason will sleep up to 3 hours. It wears him out!
     Yesterday we were working on how to teach him to feed himself. She gave us a new therapy spoon to try. It has texture and it is a spoon on both ends, also flimsy. Mason loves it! I would do hand over hand dip his spoon in apple sauce then he would put his spoon in his mouth. He does great! Wont be long he will be feeding himself.
      Every week we are given new challenges and techniques, we work daily on getting these things done and the following week when the therapist is at my house he shows off his hard work. The therapist CONSTANTLY compliments me and says "Mason is SO lucky to have you, he does SO great because of you.I wish all parents were like that." I guess as a mom I don't see any other way. I want Mason to be the best Mason he can be, he needs a little extra push and I am here to guide him and help. Mason accomplishes SO much in one week that his therapist has to write down his accomplishments because she cant remember all of them by the time she gets home to write up a report of his visit. Every week she says "Mason your going to put me out of a job!!!" ha ha.
      I am sooo thankful he has a therapist that works so hard with him, is so friendly and LOVES her job!

  
                                            Mason holding his own bottle! wooo hoooo

                               Mason feeding himself! He LOVES to eat!

    

     
   

Where does the proceeds go?

     A usual day running to the grocery store turned into so much more. As I was checking out the cashier asked me "Would you like to donate to the children with disabilities?" I didn't hesitate. I donated $5.00 she got on the intercom and said "We got a donation!" and the employees hollered. I was probably in the store a good 45 minutes and that was the first time I heard all the commotion and excitement.
      I have donated before and didn't really think about where my money was going, or who it was benefiting.We donate straight out of my husbands paycheck but we know it is going to kids born with Down syndrome. Ive always lived in smaller towns that didn't have all these opportunities so a donation at the register for children with disabilities and not being a holiday was rare.
      As I was driving home I was thinking I should learn where this money was going and see if there is something further I could do. We aren't made of money but I have a big heart and time. I called Safeway and asked them what organization their donation proceeds were going to. The lady didn't know. Another lady got on the phone and said the proceeds go to the special Olympics at Colorado springs. I asked her for a phone number and I contacted them.
      After having Mason I knew when Mason grew up we would want him to participate in the special Olympics. Dylan is in every sport every season and we would want the same for Mason if he had the opportunity. Before I knew it I was volunteering to be a part of the special Olympics program. Never in my mind would I think I would be given this opportunity. Only because I'm a small town girl, now living in the city and children with special needs being close to my heart I'm excited to be a part of this.
      If you would like to participate and be a part of putting a smile on a child's face here is where my money went, yours could too...

 http://www.specialolympicsco.org/donate/donate.html
     

Lifes moments...

      I remember as a little girl when I couldn't get something right the first time I would get so irritated and continue to try until I got it. If it was riding a bike without training wheels, beating my brother on a game of one on one in basketball, or baking cookies with out burning them. I always felt defeated, having those "I quit" moments but I never gave up. I learned to ride that bike then soon after learning to do fancy tricks like not holding on to the handle bars while pedaling fast, kicking my brothers butt in a game of one on one in basketball, and becoming quite great in the kitchen. The accomplishment felt so great! Everyday there are new challenges. Some harder then others, and some that take longer to accomplish.
      Preparing for Masons first birthday working on his baby book, first year calender, photo albums has become emotional. I blogged about how hard it was to look at Dylan's baby book and then look at Masons a while back. As I was standing there in front of the kitchen table looking at both baby books it was a different feeling this time. Looking through Dylan's there were so many accomplishments in a short period of time I was such a proud mom. In his book I have the first time he rolled over, crawled, walked, his first word...ect. All of the first year big moments. Masons book on the other hand only has a few things. Rolling over, the first time he smiled, the first time he reached for a toy,when he was bringing his food to his mouth, getting on his hands and knees,sitting with support and when he was finally able to hold up his head.
      In life we have those big moments. Getting a drivers license after years of walking, Graduation after Years of school, a proposal after years of heartbreak, a bundle of joy after months of waiting. But sometimes we forget those small moments like learning to ride a bike without training wheels, kicking some butt in a game of basketball, or baking some delicious goods.
      I have learned that Masons small accomplishments are like my life's big moments. Joy, tears, excitement, and I couldn't be more happy. Hours and hours of never giving up, of therapy, learning something new everyday, and alot of patience. Mason feeding himself, drinking out of a straw or that surprise giggle. Not necessarily big moments to everyone but they are Huge moments for our family. The "First year big moments" may not take place within Masons first year but I have learned its not WHEN something is done but IF something can be done. When I look at both my boys baby books I no longer compare, or sad but I am proud and realize Some challenges for Mason are harder and take more time. With Mason I have those "I quit moments" because I'm human but I will NEVER give up!

Green onions

      I read this story in a book called "Gifts" when Mason was a couple weeks old. It has stuck to me every since and I thought I would share.

      Green Onions can be grown in your garden, but they are far from ordinary. The delicate bulb is pulled from the soil before it is fully developed, giving it a mild flavor that is appreciated by many. The smell reveals itself before you enter the room. We enjoy green onions in soup, salad, or by themselves. But whatever the color- yellow, red, white or green- an onion is still an onion.
      Life is full of green onions. Things that are just a little different than what we are accustomed to, things that strike us as a bit unusual. We tend to avoid these green onions,unless someone slips them into a recipe and we find ourselves enjoying their unique flavor.
      "Excuse me Excuse me!" I called to a lady walking past me in the Walmart aisle.
      "I'm sorry do I know you?"
      "No, you don't, but I wanted to ask, does your son have Down-syndrome?" I said. I figured if he did then I could share my story. If he didn't, well, then I probably wouldn't see this person again. So what did I have to lose!?
     "Yes, he does" she replied with a stern look on her face, ready to defend her child.
     "My six month old son has Down Syndrome too." I replied. Her faced softened, and an immediate understanding passed between us. A friendship began that day.
      When I first looked at this woman's little blond boy, about two and a half years old, I saw my sons future. I saw my future. And I was frightened. Not because this boy was disabled or different, but because he was so normal. He was trying to pull things off the shelves, trying to throw things out of the cart, and he was eating french fries. This was what I had to look forward to? How was I ever going to keep up with a two-year-old?
      More important than my initial fright of this little boys energy was the calm feeling that engulfed me. I looked at this mother and thought, she is just like me. She is young, vibrant, and genuinely happy. I could see wisdom and contentment in her eyes. I could tell that she was comfortable with her son. She knew who he was. She was not fazed by a diagnosis, or society's definition of her child. And from her initial response to me, I knew she was poised and ready to be an advocate for him.
     That day in the wal mart aisle, my life changed. Normally, I would have gone about my business, never noticing that beautiful little boy with his courageous mother. They would have sneaked by me without a second glance and I would have been deprived of the privilege of knowing them, would have missed the honor of being their friend. And heres the irony of the situation. Remember how I figured I'd never run into that woman again? Well, I am constantly running into my friend at wal mart. Its been two years since our first meeting, and although our hectic lives don't allow us to visit as often as we would like, the times we do share are wonderful. We've enjoyed play dates at each others homes. Whenever we peek in on the two boys playing, each appears to be doing his own things, but the disarray in the living room suggests that they enjoy plenty combined mischief.
     I knew that being a mother would change me, that I would experience a love that words could not describe, that I would become a member of the "Don't mess with my kid" club. I didn't know that being Anthony s mom would unlock another world, a world where I approach complete strangers because I think we may have something in common. Tonight I will watch my green onion as he sleeps and that him for helping me experience life's robust flavor.


      This story reminds me when I was first pregnant I was watching Sarah Palin my Alaska (because we just moved to Alaska) I remember when they did a show on her son who was born with Downsyndrome. I looked at him differently he opened my eyes. Maybe it was mother instincts as this little baby that was growing inside of me had downsyndrome which I was soon to find out. He fascinated me. There was another little boy who was older then Trig (Sarah's son) who had downs, Sara spent the day with him. At the end of the day she was in tears because he inspired her and gave her hope for her son Trigg. He was such a bright little boy. Loved that episode. I thought I was crying because of my pregnancy hormones but It was so much more.

                                                  This is Sara and her cuteness Trig