A Blankey is a babies Best Friend

When Dylan was born Mike wanted to buy a security blanket. For me I never had one so it didn't seem like a MUST but to Mike it was important. So we went to WalMart looked at all the blankets. Soft ones, bright ones, plain ones, big ones, little ones. We decided on a blue one with balls on it (basketball,baseball,soccer) It didn't take long for Dylan to LOVE the blanket and need it EVERY night! I thought Dylan's love for his blanket was cute and it calmed him down for bed however If we would travel, or see grandparents we would have to make sure we had it with us and most importantly didn't forget it. I don't allow blankeys to go to the grocery store, or in the car (unless traveling) which made him love and want his blankey more. 

After Mason was born I knew it was a Must have for him to have a blankey. 

We bought a few, and several were given to us. We continued to give him a few at different times so he could decide which blankey he wanted. That he did. The small,soft blue blankey he chose was given to Dylan from my mom. But Dylan already had his ball blankey he loved. But I held on to it. Mason decided that was going to be his blankey. 

 Mason never got attached to a binky but when giving him his blankey he sucks on his finger on his right hand while having his blankey in his left hand. Its a given that when he gets his blankey his finger goes in his mouth. Only when he has his blankey he sucks on his finger. Mason cant sleep without his blankey, and it soothes him the minute he lays down or if he isn't feeling good. So now I see the importance of a blankey. Dylan STILL has his blankey (only when he sleeps) and he will be 7.

Music Therapy

When music therapy was first brought up as a source available for Mason I didn't hesitate. Music therapy has so many benefits It helps children improve their gross and fine motor skills, aids in academic achievement, improves social interaction skills and helps with communication. Mason reacts to music in a positive way. Mason can be really upset I can turn on music or sing to him and he smiles instantly. It ALWAYS works. I was sure Music therapy would be positive for him. I was right! Music therapy he learned to hit drums, shake maracas and play with chimes. Which was HUGE for him because he was sensitive to touch he doesn't like to hold, or grab things, but for something to make a pretty sound or a loud noise he loved it. Since music therapy he has his own set of musical instruments and is his favorite thing to play with.

Masons music therapist is so sweet, gentle to Mason he loved her instantly. She sings, signs, and plays music, interacts with him and also taught him to strum on a chordaharp. She has a small pick for her and a large blue one for him. (the bottom pic you can see the large blue pick) she plays and sings while allowing mason to explore and strum. He would sit there for most of the therapy time wanting to play. She was impressed by how much he loved music and how he responds to it.

Something as simple as a keyboard can help Mason move from one end of the coffee table to the other, also helping with strength as he stands there banging on the keyboard making music he is also building muscle.

Low muscle tone

      Kids with Down syndrome have a large tongue, small mouth, and low muscle tone which results in the child leaving his or her mouth open. For Mason we were told from his Ear, Nose, and Throat doctor he does not have a large tongue however he does have low muscle tone which we see more often now that he is getting older. He doesn't stick his tongue out ever but we have noticed him leaving his mouth open more often. Low muscle tone results in delay of speech, difficult for him to drink from a sippy (he wears more then he drinks), and also leaving his mouth open.
      In therapy we have been introduced to different techniques and ideas to help Mason strengthen his mouth

TWIZZLERS TWIZZLERS TWIZZLERS one of the tools we use is Twizzlers, they require alot of chewing and taste delicious!
Other things we are using right now is carrot sticks, beef jerky, celery sticks, different length and size straws, frozen fruit in his mesh bag. Anything he has to really bite down on and chew. We are constantly giving him something to chew on. Right now he loves his twizzlers and so does his daddy. ha ha.
       A result in low muscle tone is also sensory issues. Mason is constantly searching for ways to get sensory input, one of the ways is he can hit his face on something or hit his head and purposely do it again because he likes the feeling of it. So of course we don't want him to do that so some things we are trying is more facial massages, over using his teether (that vibrates), also giving him sour, or spicy foods to "waken" his mouth. Seems to be doing the trick. We have seen a huge improvement since we started these techniques and since then he has learned to say "bu bye!" This will be something we will constantly have to work at but we accept that challenge! :)

"If you judge people, you have no time to love them.”

      When Mason was just a few weeks old a lady asked me alot of questions about my feelings about having a child with Down syndrome. Although I was still coping with the news myself I answered her questions. She informed me she loved to talk to me. Thought I was Masons guardian angel and also added she thought it was odd that some parents choose NOT to talk about their child with Down syndrome. At the time I felt if I didn't talk about and acknowledge Mason having Downs I was ashamed in some way.
      Mason is now 15 months old. Although people see a special needs baby I see this little guy who loves and hates the same things as any other baby. A typical run to the store has become something I dread. Not because I'm  embarrassed of having Mason because I'm not sure how to shrug off people with their comments and stares.

     An older lady approached me with not even so much as a "hi how are ya?" the first thing she said was "Have you hooked up with the Down syndrome association in the Springs?" She said it in this "know it all tone" she continued with "I have a friend her son has downs and he was issued an iPad for free" She carried on talking about this little boy saying things like "He is happy all the time, so sweet. My friend was young just like you she was 19 when she had her baby with downs" I couldn't be more annoyed. When I was approached this way I felt like I was being belittled, like I didn't know anything. Her tone and the way she was going about the conversation made ME feel uncomfortable. No compassion, No privacy, she just kept pushing and pushing. I left her in the middle of her rambling on. I couldn't take it anymore. After putting Mason in his car seat I sat in my car with my head on the stirring wheel crying. It was that very day I learned why some parents choose not to talk about their child with Down syndrome. Not because their embarrassed, or ashamed but because people have a way of making them feel like their doing something wrong, or they dont love their child enough just like this one lady made me feel.
      She was over weight and I wasn't approaching her with "Do you know about the plus size clothing store in the Springs??" Nobody is perfect! I couldn't understand why she saw his disability and kept going on it with no point really. Am I going to learn to deal with people like this? Is it ever going to end?
      Later on that day Mason had therapy. His therapist has been with us for a year now and could tell something was bothering me. I told her about this lady, how she made me feel. She said "There was this  mom with a special needs child, when she was approached she would fire back with I will forgive you for asking if you forgive me for ignoring you." She suggested I use that. We talked for a long time, She made me feel like I wasn't over reacting and basically the lady should mind her own business.
      This is a coping process I am trying to deal with because it probably wont change. The older Mason gets the more noticeable his disability is. I couldn't love my little boy more, I'm absolutely proud of his progress, YES I know he is a gift from God (just like all babies) but I also feel I don't need to explain my love for my child at a check out line.

Life after oxygen

      All the oxygen was picked up the other day. When the guy was loading his van up with all the oxygen tanks, and Masons concentrator he had NO idea he was unloading a million pounds off my shoulders. Standing at the door watching him roll the concentrator to his van he looked back and said "Have a good day Mrs. Killion. "HA! A good day? He had NO idea he just made my LIFE!"
      When Dylan was a baby he would cry because he didn't want to be put in his crib but Mason would cry every night for a different reason. As gentle as we would try to be while putting the oxygen tubes up his nose it didn't matter it was irritating, and hurt. He started getting sores in his nose but we had no choice to put medicine on his sores and continue with the oxygen. If the oxygen tube would come out of his nose in the middle of the night I would try my to put it back on and not wake him but that was nearly impossible. Which would lead to more tears.
      Looking into his room when he is sound asleep I cant help but smile, knowing he is sleeping AND breathing. Also I have found myself getting more sleep! When I told a friend Mason needed oxygen he said "I don't think its a bad thing if it helps him" No I wouldn't say a BAD thing it was the solution to a problem. However knowing your child is reliant on oxygen is scary.
      Constant thoughts weren't "Did I pack enough formula?" no no it was more like "I need to call Lincare and get more oxygen tanks delivered" and before going somewhere I would think "I better double check and make sure I don't need to grab another oxygen tank." As a habit I still think of these things but smile when I realize he don't need oxygen! It is still really weird seeing him without oxygen but I LOVE IT!!

Q and A

Are your friends and family supportive?
My family has been supportive since day one of finding out Mason does have Down syndrome. As far as my friends its kind of been come and go with support. I feel maybe my friends don't know what to say, or how to act around Mason because they don't want to be offensive by questions they may have.


What was the reaction from friends and family after finding out your child had Downs?
After my first ultrasound I had several friends say "Don't worry the doctors thought my child had downs too, I was devastated but then the results came back negative." "The doctors don't know what they are talking about" and after I had a 4D ultrasound and the Doctor told me my child didn't have downs, I got a lot of " I told you so" and one person said "You over reacted when you had nothing to worry about."  I had a few friends that were very supportive, one calling me when I was in the hospital with Mason in tears wishing she could be there. Another telling me about her special needs sister. Which always shed positive light to hear stories and know what I was going through.
My family was very supportive I got texts sent to me daily to keep updated, to check on me, and after Mason was born my number was on speed dial.


What did my family think meeting Mason for the first time?
Hes a baby, gorgeous and it was love at first sight! When we went out to eat or saw someone my family knew they would brag Mason up. My Grandpa would say "This is my great grandson, he was named after...ME, he was born in Alaska." My aunt and grandma would show pictures to friends of theirs. Never once did I hear them talk about his disability. Always very positive.

Who do you vent to or go to when feeling down?
I would have to say my family and of course the one that rides this journey with me...my husband.

Would you be willing to talk to other parents who experience a journey like yours?
To be honest I have had LOTS of people come to me, ask my opinion on abortion, or an amino or directed to read my blogs and to be there for them understanding the thoughts, and feelings they are going through...been there done that.