Oct. 20, 2009
Something to think about
Oct. 16, 2009
Buddy Walk 2009
Posted in DownSyndrome
We attended our local Buddy Walk which was this past Sunday. I've really enjoyed this event and especially the opportunity to see so many people with Down Syndrome. I still remember the first year when we pulled up to a very full parking area. I cried. I was overwhelmed with the number of people there supporting the Buddy Walk and the many beautiful faces that I saw with Down syndrome.
On our way to the event this year, Isaiah got sick in the car. I was so bummed for him and for all of us. He had gotten dressed with his Buddy Walk shirt from last year because he was excited about going to the event. I hated that he would miss it. Roger dropped the rest of us off and he and Isaiah went home.
We were able to enjoy more of the games and activities this year. Some of the fun included a large inflatable slide. Eliana LOVED this and was happy to go again and again on it.
Mini golf was fun too.
Fun firetruck ride.
We enjoyed a beautiful sunny day. After the forecasts for rain, we were very happy to see the sun.
We enjoyed lunch there (bbq) and treats too. Joshua's numbers were good and he managed to have a few treats too. :-)
Daniel loved the art table. I need to do more of this in our days.
It is on a nice canvas that I need to hang up soon. Daniel was very proud of his work and I really like it too!
Hanging out with my dear friend Rebecca.
Sisters. (One of my favorite kinds of pictures - from the back.)
Going on the walk. This year Eliana was big enough (and willing enough) to do the whole walk herself. It isn't a super long walk, but she is still small. She seems to enjoy the walking and seeing the many posters along the route.
Just loved Eliana's sweet face in this way.
As we were walking and looking at the signs, we were keeping an eye out for Eliana's sign. It was towards the end of the walk, and there was a lot of excitement to see her cute little self looking back at us.
Don't you wonder what she is thinking?
We ran into my friend AJ and her cute daughter Janna. It's fun to see friends at these events. I wish we lived closer and could see each other more often.
It was a fun day. I look forward to going again next year.
Blessings
Leslie
Posted in DownSyndrome
I am blessed in so many ways. I know that sometimes people look at my life and see the weight or the burdens of things we are dealing with. I understand that. I probably would have viewed it that way a few short years ago. A lot has changed in our life in a few short years. I won't say that it hasn't been hard - or that it doesn't continue to be hard some days. Without going through the hard times though, I wouldn't have learned about God's faithfulness, love and goodness.
The hard times have changed me and given me a different perspective on things. For me, this is a good thing. That doesn't mean that I don't wish at times that it were easier, that there weren't so many decisions and things to figure out. It is an area though in which I have much to learn about leaning on God, listening to Him and following where He leads me (and that isn't always where *I* want to go!).
Lately, I feel overwhelmed with the need for information and also the need to make decisions. What is best for each child? How can I help my children to learn given their unique and sometimes challenging learning needs? How do I even know what is best given the myriad of choices available and the conflicting advice on which route to take. It leaves my head swimming sometimes, though I'm trying to tackle it a little bit at a time.
One of the blessings of making decisions and that most of them aren't final. I'm not commiting to something that can't be changed if it isn't working for our family. I'd like to make the best/right decisions the first time, but know that isn't always possible. I don't want to make wrong decisions though that are detrimental. Does this even make sense?
One of the decisions looming in our future is what to do with Eliana when she turns 3. She is currently in a program for children age 0-3. While in this program she receives therapy for her various developmental needs. This is a wonderful service. Most of these therapies occur in our home which is also a blessing. She currently has 5 therapies per week (2 speech, 1 occupational/feeding, 1 physical therapy, and 1 developmental/music therapy). This will all end when she turns 3. The typical course of action is to then enroll in public school preschool where she would get therapy.
Personally, it would be very hard to enroll my little girl (she is still so very young developmentally) in school and have her gone each day. I do want to do what is best for her though. I'm not sure that for our family though that this is the best choice. I'm still praying, pondering and looking into our options. I'm wanting God to show us what is best for Eliana.
I've had a couple of things recently that are encouraging me that we can school our girl at home. Not big things. I'm not sure God always speaks to me in big ways though.
Therapy. That is honestly the biggest draw to putting her in school. Our insurance will cover some therapy, but not all of it. We recently had good news about the therapies that Eliana will be able to receive that is covered by our insurance. She is eligible for twice what we thought she would be able to get. One half of that would be for speech and the other half for pt/ot. It is not the amount that she gets now, but is still much more than we thought we'd be able to get. I'm thankful for that!
Teaching Eliana. She learns in some different ways that will make using a traditional curriculum challening unless adapted for her. I have a lot to learn about how best to do this (while juggling schooling for my other children as well). I've gotten some encouragment here too. I'm going to share three of them.
First, my friend Hollie recently showed me a curriculum designed for special needs children (specifically Down syndrome) made by/for BJU press. I wrote to the gal that wrote it and she sent me a copy of the curriculum for 3yos. It isn't complete, but is a great start. I need something to help me as I get started and I think this will be a great thing.
Second, I ran into a blogging friend while we were on vacation! How ironic is that? I recognized her daughter from pictures on her blog and when I heard her name, I knew it had to be her! Beth is homeschooling her 11yo daughter who also has Down syndrome. She has shared great information with me in the past about homeschooling DS. We were able to talk briefly and I shared some of my concerns with her. Beth was very encouraging to me that I could do this.
Third, just today I received a gift. Two new books that will help me teach Eliana.
Teaching Math to children with Down Syndrome
AND
Teaching Reading to children with Down Syndrome.
Rita was doing a give-away on her blog to celebrate the birthday of a little girl that lives far away that has captured her heart. You can read more about this celebration and see her beautiful family on her blog. Thank you Rita!
Now, I realize that none of this is huge. I realize that this may not be God's answer. I'm open to hearing, but am increasingly at peace with the path I believe He is leading us down. I am thankful for the opportunities that I have to learn, to be molded and to grow. I'm thankful for a Father that guides me, teaches me and loves me completely.
I'm thankful for the sweet gifts He gives along the way!
Leslie
Aug. 12, 2009
A really sweet story
Posted in DownSyndrome
This touched my heart and I bet it will yours too!
Dog Saves Boy's Life
Posted in DownSyndrome
A great video about people with Down syndrome and their dreams.
Dreams
Apr. 13, 2009
Praying and Remembering
Posted in DownSyndrome
Two years ago, a little girl entered our family and we were forever changed. Learning that she had Down syndrome was a shock and hearing that she had heart defects was difficult. The early days were hard, but we were surrounded by family and friends that reached out to love and support us in so many ways and medical and professional staff that showed us how to care for her. Those dark days were ones in which we saw God's hands at work in so many lives - all touched by a tiny, sick little girl.
We watched her struggle - heart failure, feeding difficulties, sickness and feeding tubes. We have also watched her succeed - crawling, walking and learning to eat. We have had numerous people help in these successes from doctors to therapists, from family to friends, from encouragers to prayer warriors. All have made a huge impact.
I have learned so much about God in watching Eliana. I've been blessed in ways I never could have imagined when I sat scared and alone in a hospital room while my baby girl was in the NICU. This was not a journey I wanted to take because I was afraid. I'm so glad that God knew better. We would have missed out on so much! Eliana is a gift, a blessing, and a delight.
Children like Eliana in other parts of the world don't have the same opportunities that she does. The conditions are grim and heartbreaking. These children need someone to love them, to pray for them and to help them.
I wanted to share again about Reece's Rainbowm a wonderful organization which helps facilitate the adoption of children with Down syndrome from other countries. We have been sponsoring children there and praying for them too.
One of the little girls there has drawn my heart. I pray for all of the children in general and very specifically for this beautiful little girl named Tonya.
Her time is running out. She is due to be transferred to a mental institution when she turns 4 - this summer. Will you please join me in praying for her? Will you also pray about what God would have you to do? There are lots of ways to help an orphan. You can pray, sponsor a child, sponsor a family that has made a commitment to a child or you can go yourself and bring a child into your family.
"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress." (James 1:27)
Another mom, Meredith, has written about her children and the conditions into which they were born and lived their early lives. Please go read what she has to say - it is very moving. I know I was in tears after reading it.
"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act" Proverbs 24:12
I know that God loves each of these children just as He does you and I. I know that He is there with them. I pray that these children and those that care for them would also know how much He loves them. I pray that God would move our hearts to follow His will. It is hard sometimes to know what His will is for our lives. I know that He wants to guide us and that we will be blessed in following His path for our lives.
Praying as we celebrate Easter that we would know the joy of His resurrection, the amazing gift of His sacrifice and the blessing of His abundant love.
Blessings,
Leslie
Apr. 10, 2009
Eating Success!
Posted in DownSyndrome
I don't know if I've mentioned this, but for me, having a child with special needs has opened up a whole new world. There are so many things that I've taken for granted - for myself and my children. The many things that children learn so effortlessly. Things like eating and talking and even pointing with their finger. All of these things are skills that we have worked on teaching Eliana. I'm so thankful that someone has figured how to do this and that I have people helping me to teach Eliana.
Today's milestone may seem small - and for most children it probably would be. For Eliana, it was a neat milestone. I was reflecting recently on her eating and how far she has come. Just recently she seems to be tolerating textures better and her oral muscles seem stronger. Part of having Down syndrome is low muscle tone. This includes the muscles in the mouth which affect speech and feeding. The tongue is also a muscle which lacks tone and is why sometimes it is harder for children with Ds to learn to keep their tongues in their mouths. So many little details that I took for granted before loving someone with Down syndrome.
Anyway, back to today. During Eliana's speech therapy, we had been working on oral motor exercises. We were going to give her some food to eat and then noticed that her lip was bleeding. We didn't want the food to irriate her mouth (and give her a bad food experience) so we passed on the food. A little while later, Eliana signed "eat". She then walked over to a low cabinet and pulled out a plate and a bowl. She then set these on the table and crawled up into a chair.
None of this was surprising to me. She likes to imitate and play and I thought this was what she was doing. Well, we decided to offer her the food I had gotten out earlier - "pirate booty". It's similar to popcorn, but has more of a "melt in your mouth" consistency like cheese puffs. To my surprise, she picked one up and put it in her mouth.
For those that haven't been reading about Eliana's journey, here's a little background to put things in perspective. Eliana was 10+ months old before she was able to eat without the aid of a feeding tube. She is still eating foods mashed and we are trying to teach her to bite foods by putting them in her mouth (when she'll let me!) and asking her to bite. She still has huge oral aversions (from the feeding tube) and often does not want things near her mouth.
Oh, and she has *never* asked for food. She has at times wanted food someone else was eating, but never initiated it. This was big for a little girl.
She continued eating and eating the snack. Almost stuffing her mouth at times. (I won't share that picture.) She didn't throw her food onto the floor, she ate it.
This feels like the first step on a long journey where I can see a glimpse of the light. She is getting it. It's been slow, but she is getting it. My little girl is going to learn how to eat.
Blessings,
Leslie
Oct. 15, 2008
31 for 21: Contagious!?!
Posted in DownSyndrome
Thanks to my friend RK for sharing this! (Click on her name to visit her blog and see her cute little Braska!) It was too good not to pass on - and every bit of it so very true!
*~*~*~*~*
Newsflash: DS is contagious!! Keep reading!!
Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.
Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, picc lines and the NICU is another side effect.
Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.
The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.
Wendy Holden
*~*~*~*~*
Blessings,
Leslie
Oct. 13, 2008
A short entry for 31 for 21
Posted in DownSyndrome
Well, I was hoping to post yesterday about our fabulous Buddy Walk! I will post soon - and with pictures. We had a fabulous day and I'm so glad we were able to be there!
I wanted to share a blog entry with you. It is a powerful story of the influence of a little girl on a woman's life. There is so much to this story - deep sadness that breaks my heart. And hope that encourages too.
Click on the link below to read Linda's story.
Gather My Children
Reading this story encourages me to pray fervently and look for ways to help children find homes with a loving family. I'll be sharing more about this in the future - and ways you can help too if you are also led.
I'm so very thankful that our Eliana was born at a time when bringing her home was encouraged. Our lives are so much richer for having her in it. I'm so very glad to have her in my family. God has blessed us abundantly!
Blessings,
Leslie
Oct. 11, 2008
Raffle - 31 for 21
Posted in DownSyndrome
Hi Friends,
I wanted to let you know about a raffle on my friend Stephanie's blog. She is doing this to help raise money for Oleg, one of the children at Reece's Rainbow (the site I mentioned yesterday). One of the biggest factors keeping these children from being adopted is the high cost of adoption. Having a "grant" that goes toward the adoption helps so very much!
She is raffling a very cute, custom-designed handbag. Check it out!!!
My heart is heavy for these precious children. I'm praying that they would find homes, that they would receive the care that they need and that God would touch the hearts of those that he wants to bring them home. Please check out Stephanie's site (just click on her name in the first paragraph - and join me in praying.
"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress." (James 1:27)
Blessings,
Leslie
Posted in DownSyndrome
Wondering about this title? I just recently read about this - 31 for 21. It's something in support of Down Syndrome Awareness Month which is October. Many bloggers are blogging each day in the month (that's the 31) about Down syndrome (that's the 21 for the extra 21st chromosome). I think it's a great idea.
I'm not sure what I'd write about for 31 days. I guess that's one advantage to starting a little late - there are only 21 days left in the month now. I'm going to borrow an idea from a friend. If you have a question about Down syndrome, my experience or just something you've wondered but haven't asked, please feel free to ask. You can email me or just post a question in the comments and I'll blog an answer. (I'm really wondering if anyone will ask a question! LOL)
I wanted to share about an organization that I think is pretty special. Reece's Rainbow. It's an organization dedicated to helping people adopt children from foreign countries with Down syndrome. You can visit the site and see many of the beautiful waiting children. There is a lot of information there too about adoption, sponsoring a child and helping families to bring a child home. You can click on the link above (in the name of the organization which is underlined) or go to the button on the right hand side of my blog.
We sponsored a child last Christmas in lieu of Christmas gifts and are looking forward to doing that again this year. We've also talked about other things we, as a family, can do to help this organization. These children are heavy on my heart and I pray for them often. Will you join me?
Blessings,
Leslie
