Thursday, September 27, 2012

First (for Montierths) Buddy Walk

We attended our first Buddy Walk just a few weeks ago. Joined by some close friends and family we celebrated the community that Elias' birth brought us to. It was wonderful to see so many people. We noticed right away that many of the children that had DS were younger. Kent remarked on this and I explained that only 10-15 years ago the best recommendation was abortion or to institutionalize them. I felt a profound respect to those who had chosen otherwise and in so doing pioneered the way for us. Its alarming for me to know that 98% of pregnancies with a suspicion of Down Syndrome end in abortions. Keep in mind this is only a suspicion. the blood tests (Triple screen) and ultrasounds tell you the likelihood of it occurring but unless an amniocentesis is done, you do not know 100%. It made us realize that we are part of a relatively young movement with the opportunity of changing how people view those with DS. The other thing that made an impact on me was that the families were all truly happy. It was about love, acceptance and the celebration of life.

We set a goal to raise money for Sharing Down Syndrome of AZ and exceeded it thanks to the generosity of friends and family all over. Truly we were touched and felt of your love and support. Thank you, thank you, thank you!

I quickly saw the value of such gatherings as I spoke with a company that offers services for physical, speech and occupational therapy. The last few weeks I've been drained as I've tried to figure out the 'system' and all it's intricacies. We filed services through our insurance first without realizing they charge $180 per session whereas they only charge $75 when filed through state Early Intervention. Then to further complicate matters, our insurance would not accept the provider that the state had contracted. Kent often reminds me that we have phenomenal insurance but they had very few that did therapies for children and all of them were in office.

Current studies show that the most effective therapies for children are done at home. First off, they are able to incorporate daily living activities into their exercises (if you have stairs in your home,they help them learn to use them, they utilize the toys you have to work on developmental milestones etc) , secondly they are more designed as a session to teach the family how to make 'play' effective. Currently we're working on building Elias' shoulder strength. I'm taught how to properly position his limbs and the kids have learned where to hold the toys so as to motivate him to hold his position. Without realizing it, Elias is exercising all the time. (Perhaps that is why we get so excited when he reaches certain milestones. Just this last week he began rolling over front and back. We have to watch out when we place him on the bed and he's tired of laying there, he'll roll his way to a new spot. He's given me quite a scare a few times!)
One of the first things Keila wanted at the Buddy Walk, the best ice cream ever!(Blue Bell) with her friend Maya. She often wishes for a big sister and we're glad that Maya loves the role!

When we worked out the final cost to our family, we would be paying over $2000 annually just for physical therapy. Between co-pays and other therapies we would need to set aside nearly eight thousand a year. We felt the rub of being the middle class that was too rich to qualify for Medicaid but too poor for the dent it would make on our family income. Kent and I began to look into what other states offered which greatly varied. These were often more liberal states with wonderful services but sometimes there was an overload and a wait list on their systems since people had moved there just for the same reasons we were considering.

The people at DDD we not helpful and only offered the bare minimum of info. I began emailing around to others in AZ and was at a point of huge frustration when I found some answers at the Buddy Walk. While Elias won't qualify for long term disability until he is three years old, he does qualify for funding since he is developmentally delayed. This will act as a secondary insurance that will help cover costs.

I'm beginning to grasp the differences between the million and one acronyms as well as the different application forms and hoops we will need to jump through. Thank heavens for organizations designed to help and support. We'd be left in the dark otherwise.

We're so grateful for answered prayers and loving support. Thanks to everyone for everything!

Tuesday, September 18, 2012

A Mother's Love

People say that a mother's love is blind. I've come to think of it differently, that perhaps a mother's love sees with the truest sight there is. She sees a child of God, she sees God given potential before it is there. When that child behaves poorly or makes terrible choices, she still knows that is not who they are and despite pain or frustration she loves regardless of the acts. Her love is akin to Gods love - imperfect
as it is - that we can give or receive as flawed human beings. This doesn't mean I do an award winning job of it -I'll be the first to admit it but it does mean that in all the loving we give our best at that moment and God makes up for the rest.

All these thoughts are churning through me because of an experience I had today while aiding at the preschool. I have been a little shelter and naive about how people would receive Elias. I am blessed to be surround by those who see past his diagnosis of Down Syndrome. Perhaps I'm overly sensitive but I was hurt today by the responses of some women's to my son. It was a busy day in the nursery, we had six children and four of them were new to the room. There was the expected crying and sadness, but out came the binkies, blankets and stuffed animals. Soon everyone was distracted and asettled. I had the job of changing all the diapers while the others handle the food for sanitary purposes. It just seemed to be one of those days where there was a constant flood (pun intended!) of diaper issues and I couldn't get any time with any children, let alone my son. The joy/trial of a child with Down Syndrome is that they are often so content to lay quietly that they become neglected.

Since I was busy I asked one of the moms to feed my soon. I briefly explained that he had DS and taught her how to support him so as to help him eat a little easier. There is now a look, typically of pity, that I've grown use to but I brushed it off. She didn't do much beyond that and I simply thought she might not be a motherly type but then later I saw her cooing to another child exactly the same age as Elias. It bothered me a little but I thought it might be due to a lack of education on her part. I shared with the other moms what I had been learning from our physical therapist and made particular mention that all children, but especially children with special needs needed to have attention and stimulus to encourage them in their development.

It was apparent that two of the gals had signed up together hoping for plenty of chat time and for a baby fix. It gave me hope that they might enjoy snuggling my son but even when all the children were happily occupied, no one checked on my son. At several points during the two and a half hours I had to direct one of them to place a toy in Elias hand that had fallen from his reach. The other six month old child was constantly picked up and held when he wanted nothing more than to inchworm his way across the floor. He'd squirm out of their arms while my son laid there, in sight totally unoccupied and unnoticed while I was too busy to give him some love. Thankfully one of the three women there noticed my distress and finally held him and spke to him. I was so grateful to her for this small but gracious act.
Elias loves splashing in the bath.

This is the first time I have really felt gap and longed to connect to another who had a child that may not have the perfect body but certainly had as precious a soul as any other child. I ached inside and held Elias all through his afternoon nap with a deeper tenderness than usual as if to make up for this morning. I realized that to some degree these women may not have been comfortable with him and this affords me a chance to educate others about people like him. But it doesn't mean it didn't hurt me that they couldn't see what I saw and give him that SOME love and care.

I now understand why Rick and Abby Smith or Kelle Hampton write their blogs. I now truly see that there is a need to educate others and though my reach is small perhaps it will ripple out and make a difference somewhere or for someone. I am so excited for this weekend to attend the Buddy Walk. Without saying a word I know these people will understand my heart.
This is one of my favorite shots. Elias usually clams up when I take the camera out. I was changing bed sheets and fluffed them up around him just for fun. Apparently he liked it too and we did it for another 15 mins. It took a while to finally change sheets, but I'm just fine with that. That time was priceless spent playing with my angel heart!

Friday, September 14, 2012

Ward Campout or Better Known as Mom's 24hr of Freedom!

Our church held a campout for the ward/congregation. We've gone twice in the past years but have learned from experience to go when the little ones are at least 2 years of age. (You don't win friends in the ward with a crying child all night long! ;0) So Elias was my little buddy while I shopped for stuff for decorating the home and Kent took Isaac and Keila.

Keila's version of the campout: I saw chubby mushrooms (mush-ooms). I ate a treat. I saw a birdie. It sing. Painting grasses (?) The birdie's blue, purple, purple on the birdie nose. (Not sure what this is about ...) Smell flowers. Ate water and eggs and pancakes.

When I asked her what her favorite part was she said snuggling. Kent said she missed me a great deal and wasn't quite herself. She's a Mama's gal after all.

Isaac's version of the campout: First we drive there and after we got there we set up our tent. And I helped two other people set up their tent and then I went back. And then... it was soon the sun set and then it like zoom and it was to the night. And then we got on our coats and then we ate MARSHMELLOWS! After that we went to bed, we brushed teeth and then we readed books a bunch. We first read the scriptures and then we read fun books and after that we went to bed. Oh and also said a prayer. It was easy to sleep. I played with friends right when we got there. Well we just woke up, ate, played and soon went home, collected some gifts (rocks like the sand rock and flowers)

When asked what was the best part of it he said EVERYTHING! He loves camping especially with his Baba.

Kent's version is more of the highlights: Camping trip started with cleaning the church. We bought gourment Taco Bell in Flagstaff where we got rained on briefly. We drove on to Sunset Crater and quickly set up our tent. The kiddos went off to play and while they were playing, I played a game of Scum. Later on we ate our dinner and had smores that evening. I got to know 5 or 6 new people in the ward. We read books and went to bed. The next morning we took down our tent and I did alot of photography (took the telephoto lense - sneaky!) All in all I had lots of fun with the children especially when reading books at bedtiime. I enjoyed taking pictures quite a bit.

Beautiful scenery! The rain this year brought alot of wild flowers. Looking at the picture now I wonder if Keila's "painting grasses" are the red flowers I refer to as Indian paintbrush.

This is the 'purple birdie'. Apparently there were lots of blue jays there.
I love her little toddler hands. The dirt under the nails, the soft and rounded palms! Ah, she's growing up too quickly!
They picked a bouquet for me and Kent was wise enough to take a picture of it. By the time it got home to me it resembled nothing like what it is here. All the same I kept it on the table for a day, a gentle reminder that I was thought of and missed!

Friday, September 7, 2012

Crazy But Good!

There are days where you're sure you've earn the most 'Agitated and Irritable Mother' award. Today was one of those days. While we wouldn't change having Elias for one second. There are things we wish were different. There is a long list of appointments we are alway making or running to and it has taken it's toll on the older two. Isaac does better than Keila but when they feel a little under recognized - and it tends to happen to both at once - the clamouring is deafening. We dropped off Isaac today at school and was headed to yet another appointment when Keila had one of those limp noodle fits. You know, the ones where they refuse to walk but you can't hold them either, just drag a body that appears lifeless with the exception of the screams issuing from the open mouth. A few ladies at the school took pity on me and tried to help and only got scratched or had sand thrown on them. Someone finally managed to pick her up from behind and hauled her to the van for me. Her screaming was too much and I turned around and spanked her twice. Undstand that this is a rarity for me. It wasn't a very hard but certainly enough to startle her into silence. We had just bought an ipad and I ahead loaded it with a movie and a few games for us to play while we waited at the doctors. It was my way of trying to make what little time I had with her 'special'. After she'd calm down for some time I pulled it out and managed to salvage the rest of the hour. But they were all tired and by the afternoon once I got Isaac home, we were at it again.

It's times like these that I try and remind myself how temporary this will all be. And while it's hard, it won't do permanent damage .... (at least I keep praying it will be so!) and deep down we all love each other. That's why I needed to record these two conversations, they warmed my heart after a difficult day.

We have a bedtime routine where Kent goes in to talk to them about their day and then I sing them a bedtime song of their choice. I usually leave with the words, "Love you always and forever ...." The other night I changed it and told Keila, "You know you're my bug-love always and forever." Her reply was "And you're my Mama always and forever. Love you!". How right she is and how very grateful I am for it!

Isaac said something wise to me after returning from preschool. I can no longer aide in his class anymore but have take on the position of the nursery coordinator so that I can stay with Elias and still get the discounted rate. I was asking about what he did in class and telling him how I missed being here and watching him learn and play with his friends. He sighed and said he missed me too but, "Life is life". I smiled and asked if it was a good thing and he replied, Yes, but it doesn't, mean I don't miss you. It was the sweetest thing for me to hear. He's growing up in so many ways.
Hmmm... peas!

Elias is doing well. He's now all of 14 lbs and smiles bunches for me! He such a happy child and very chill about almost everything. Note the 'almost'. The other night Kent tried to feed him his bottle and he refused it. We thought he wasn't hungry so Kent laided him down to sleep. You wouldn't believe the screaming you heard coming from his little body. So after a few minutes, I picked him up and guess who started grinning. Then he began his sucking motion with his lips, typically a signal that he's hungry. He downed the 5 oz without a complainted and went right to sleep. Apparently the nighttime bottle is a Mama thing only. What a stinker! If you watch Phineas and Ferb you'll know what Cutonium is. Elias is pure Cutonium, lethal and irresistable. What his Cuteness wants, he gets! How I love these little guys, life is crazy but good!

Tuesday, September 4, 2012

Stepping Stones Preschool - A Second Home

Another school year has come again. We were hoping to get Keila into her own class this year but we weren't sure on how the potty training would go so we held off. She's on a wait list for it, in the meantime whenever I'm working in the nursery she gets time with Mrs Thompson who she had last year.

I was a little sad this picture came out fuzzy, but it was a sweet shot for just a split second.

Isaac has Mrs Crabb this year and she's wonderful. For some reason he's blossomed in the department of arts and crafts. Perhaps it was all the summer projects I bought from Micheals to keep him occupied. Anyhow, he loves her and has already 'gifted' a picture or two to her. She told me he has the feel of a little engineer, always working with his hands to create.

We're so glad to be at Stepping Stones again. It feels like a second home and we've come to love everybody that we work with there. Hooray for another school year!