"yaaay Mason"

One day 7 therapists were in my house at one time. They wanted to do an evaluation to see where Mason was on his motor skills, fine motor skills, speech, and growth. To say the least I was a bag of nerves. Not so much worried how Mason would do but how 7 people were goin to give me feedback. I only had past experiences to go off of and well lets just say thats why I was freaking out!!!!!!!
 The door bell rings and it looked like I was going to have a party. 7 Ladies single file line standing outside my door as each one walked in shook my hand, introduced themselves, and told me what their job was. I put Mason in the middle of the floor while all the therapist sat around him with their clip boards, and pens. The caregiver already informed me how the evaluation was going to work. They were going to test different things on Mason, and ask me a MILLION questions. At first they couldnt believe how cute and big he was. I thought that was funny because compared to other kids his age he was in the lower 15% but with kids who have downs he is in the 90% I found out.
      It began...one of the therapist pulled out these little blocks and wanted him to grab them. He showed no interest. She asked me if he grabbed for things and I said sometimes but not a whole lot. I told her he loves this little piano rattle she asked me to get it. He reached out with both hands and grabbed it. Everyone clapped for him. And naturally when I find something that works I buy 2 of. So I got the second one out and he grabbed that one also. The same therapist laid him on his back, he flipped right over. She praised him. She stood him up and he could bare all weight on his own which was great. I told them he LOVES to stand and LOVES his bouncy horse. I continued to tell them how he has figured out how to rock himself and he knocks himself sound asleep every time. They wanted to see how he was in his horse. I put him in it and he instantly smiled and began to rock. They told me that is great for him in many ways. It has things for him to grab at, it makes sound when he moves it so it encourages Mason to keep moving, and it strengthens his muscles.
      I got him back out and put him on the floor, he was laying on his back. A therapist grabbed his hands to see if he could pull himself up to sitting position and sure enough he did. He can sit by himself with the support of his hands and can sit alone for a short period of time. I got positive feed back left and right. I was loving it! I put him on his back, pushed his legs up to his bottom, flat on the floor and Mason raises his bottom up. Again with more praise and positive feedback.
     The nurse asked me several questions, and did a short eye exam which she said he did great could follow her up to down, side to side, and could cross his eyes. She was a little worried with his hand eye coordination so she suggested to see an eye doctor for a follow up. (when he tries to grab for something he swings, and misses every time)
      The speech therapist said he was pretty quiet, asked me if he laughed I said only when he is tickled. she asked me if he makes "ba ba ba ma ma da da" sounds and the answer I gave her was only when he was tired. Mike and I call that his night night song. She said he should be making alot of sounds at this point and she would like to see more sounds. I did tell her he does high pitch squeals and blows raspberries all the time. That was great news she informed me.
      The occupational therapist was concerned with his fine motor skills. He doesn't grab things as often as he should, he has lack of interest in toys, he didn't turn when his name was called out, he doesn't feed himself and so on.
      After a million questions, a hundred different tests the therapist came to the conclusion he was 30% delayed. After that number was thrown out to me they said he could be seen every other week its up to me. I told them weekly bc he hasn't started any therapy. The only things he knows are things I have worked with him. I'm not a therapist, not a doctor, just a mom who is shooting for the moon of endless possibilities.
      I was told several times Mason was in good hands and he was doing great!! :) I know thats their jobs but I WILL TAKE IT!

Growing boy...

it begins...

      I grew up in a small town where there wasn't a  lot of kids with special needs because there wasn't the resources they needed in the area, I don't have anyone in my family with special needs, or in my husbands family. I have never known a person with Down syndrome so bringing a precious boy in the world with Downs is very scary because I'm uneducated in this area. So I thought it was time to educate myself  I  read several books on kids with downs, their rights,  raising a child with special needs, other parents stories, I also talked to several other parents who have babies with Down syndrome (which was more for my support so I didn't think I was crazy and alone.) I quickly found that support was a priority because people who don't walk in my shoes  on a daily basis can shrug my feelings off, tell me they know how I feel (they couldn't possibly) and down right judgemental. 

      After doing my research I learned what Mason needed and what the military would provide. I got a phone call that I will be forever grateful. It was from caregiver, shes the one who decides all the care Mason needs and gets a team together basically shes the one with the answers to my questions and she takes care of business.Before she contacted me I made several calls, was given the run around, not getting answers and was feeling defeated.

       The day she first came to my house I filled out paper work, she asked me what I was most worried about. INSTANT tears, I held Mason close to my body and said "we moved here 3 months ago and I haven't been able to get answers, He hasn't started any therapy I'm upset, angry and worried"  She got up, got my a Kleenex, calmed me down by saying she can see that he is in good hands also just by  looking at him she could tell I have worked with him a lot and he is doing quite well. She promised me she would get everything going ASAP and god bless her she meant it. Before I knew it I had an occupational therapist, home nurse, physical therapist, speech therapist, care taker,developmental therapist in my house for weekly visits. I instantly felt a sense of relief and a HUGE appreciation to Masons caregiver.

Keeping the door shut...

When our door is closed we see Masons progress and we are SO proud of how he is doing and this adorable little guy he is becoming. Sometimes we open our door we see other kids younger then Mason crawling, starting to talk, standing, much bigger in size...some walking or just the little giggle we dont hear from Mason yet. A Sadness, and a  little jealousy comes over me. Everyone tells me "DONT COMPARE, DONT COMPARE"  but I would like to say its easier said then done. I know these feelings are normal and hope one day these feelings will go away.    This is a poem that is dear to my heart that I read often... I think I posted it in my blogs before but I feel like sharing again.                
                                                             My face might be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As god in the heavens

Looks down from above

To him I’m no different

His love knows no bounds

It’s those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I’ve chosen

Will help me get started

For I’m one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I’ll do as you do

But at my own pace.

Keep on keeping on...

     Holding Mason, talking to him he puts both hands on my cheeks, smiles and talks to me. So precious. Mike and I notice progress like smiling, rolling back to front, front to back, jabbering, and finally being able to hold his head up. Mason will be 8 months old in a couple of weeks which kids his age can talk,feed themselves, pull themselves up to walk and know what is going on around them. Last week at the doctors office we were given a check list of things kids his age should do and unfortunately we weren't able to mark off one thing.
      I was unpacking boxes yesterday and In one box it had Dylan's keep sake box which was full of cards,things received at the hospital, stories of his first year and everything he accomplished, and so much written in his baby book that I wrote on the borders,and on the inside covers. Also in the box was Masons baby book, Calender, and keepsake box. Tears roll down my face as the only things in his box is book after book, paper after paper about Down Syndrome,also phone numbers of people to contact for Downs, his baby book empty because he hasn't started all of his firsts, and there are only a couple Congratulation cards. (we mostly got questions, and "I'm sorry"
      Venting to my best friend, crying not because I am disappointed, or I don't love my child just simply because in some way I feel I failed my baby, I feel the joy of having Mason was taken away from me because of all the fear, negative feed back, and worries. I have recently become friends with ladies who have kids with Down syndrome and I feel selfish, unappreciative because they go through so much more. Mason stayed 2 weeks at the hospital while a friend of mines baby stayed 5 months. I know I will go through things that people never will and I wont go through things or can imagine going through certain things that my friends go through.
      Mike and I have learned to be patient,not compare Mason to other kids his age, don't take things for granted, and most importantly let Mason be his sweet little self and let him guide us. Keep on Keeping on...and always seeing the ups of downs! Its a learning process but I am learning and staying positive that I can make the best out of every situation.

Compassionate Reasignment Approved!

      Its the lastnight before the movers came, I stood at Mason's door peeking in on him while he was sound asleep. Reminding myself everything I do I do for my kids. I didnt want to leave Alaska things were great there but I wanted Mason to accomplish everything he could and have all the resources available which was not in Alaska. Looking around his room remembering when we first moved in the house how it was going to be an office not a babies room made me giggled. Remembering the excitement of preparing his room,remembering the fears of pregnancy,but also remembering the joy when I finally got to bring Mason home.
      Colorado Springs was where we were headed they have a downsyndrome organization, support groups, physical therapy, speech therapy, occupational therapy, pediatric cardiologist, and our family was 12 hours from the springs. I was looking forward for Mason to be in the hands of people who work with kids like him.
      Handing over my house keys Saying goodbye to all the people who stood behind me through my pregnancy,and looking down at Alaska as we flew off was emotional and very difficult, but kissing Mason as we flew off reminded me I was doing what I needed to do.

Doctor "Lets start with the face..."

      Doctor appointment after Doctor appointment has began to take over my life. Walk in, Sign in,Wait...repeat. Doctor walks in, "How are you Mrs.Killion?" the small talk starts. She informed me that she was soon getting out of the military and she was no longer going to be able to take care of Mason. She asked if it was okay for the doctor who was going to take over her position to sit in on this appointment. Well of course its okay I said. She leaves the room, comes in with the soon replacement doctor. Again with the small talk. "How are you? Nice to meet you."
      I lay Mason on the table, who is in his diaper only...and his normal doctor says " okay lets start with his face, what do you notice that is different?" The other doctor replies saying " his eyes are further apart, his nose is flat, he has a small round face..."
I looked at the two doctors in complete utter frustration. I'm thinking to myself  "What the hell do they think they are doing?"
      They continue on... "Do you see how he has a very thick neck, and his ears are lower? Now lets look at his hands" She pointed out the Palmer's crease (which he has on one hand) and also pointed out the chubbiness of his fingers. I couldn't even speak I was so frustrated and angry. One doctor picked him up, having him in standing position, laying over her arm and she says " Down syndrome babies have poor muscle tone and they "drape" like a wet towel." Just then Mason proved her wrong and shot straight up not "draping" I had to giggle. ha ha
      "WET TOWEL???" My mind was racing at this point I could think of a thousand names to call her and it wasnt going to be a wet towel. The appointment seemed to take forever, they continued on talking about his shorter legs, his feet how there is a gap between his big toe and little toes, talked about how their mouths are small, tongues are big and so on... I asked his doctor what the point of pointing everything out was, and she told me the doctor who is replacing her hasn't worked with a baby with Down syndrome and she wanted to point some things out. I couldn't believe my ears. They couldn't do this in the office after the appointment? All they looked at was his looks.What does that have to do with his medical needs? I knew this was the first and last time this doctor was going to see my son. Where is the compassion?
      Compassionate reassignment was brought up to me at the hospital months prior after finding out Mason did have Downs. I loved my friends, loved Alaska, and wasn't ready to move. The papers were in process of getting approved or denied at this point. After this appointment I realized it would be best to move, for Mason so he can have doctors who work with kids with Down syndrome and have all the medical needs in our area also. I went home had a talk with Mike about our appointment and how disgusted I was. He agreed Mason would not be going back to that doctor.