What Can You Do?

Thank you for reading along during this month of posting on special needs. I hope you got something out of it or enjoyed it in some way!

I want to end leaving you with thoughts on what you can do. There are so many people around the world living with special needs, and there is so much that we can do to support them. Below are a few ideas.

1) Go to End The R Word and pledge to stop using the word retarded. Educate yourself on the issue, spread awareness, and read ideas on how to approach people when they use the word.

2) Sponsor a child with special needs. There are so many great organizations working for children and adults with special needs that rely on our donations to continue. This little girl, Molly, lives in India, has cerebral palsy, and was abandoned by her parents. You can sponsor her at any amount a month, even just $10, to help cover the cost of her care; including food, physical therapy, clothes, and caretakers. Go to Sarah's Covenant Homes to learn more.


3) Volunteer! One of the BEST things you can do is volunteer your time with the special needs population. End The R-Word suggests the Special Olympics and Best Buddies. If you are in Toronto, a few great organizations are Geneva Centre, Holland Bloorview, and MukiBaum. And then there are schools like Sunnyview Public School and Beverley Public School that love volunteers. Parenting a child with special needs can be exhausting. Consider partnering up with a family in your area who has a special needs child. Provide them with support, whether that be bringing over meals once a month, helping with groceries or housework, providing free babysitting, or even just providing friendship and companionship.

I often hear "I want to volunteer, I just don't have time." The three ways above range in time commitments. Set aside jut an hour a month and bring a cooked meal over to a family who has a child with special needs. This will only be an hour out of every month, but it will make a huge difference to this family. We are all capabale of helping in some way, and if we each make an effort than we will see huge strides in quality of life for people living with special needs.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

NaBloPoMo's End

The month of December is coming to an end, meaning that my posts on special needs are also coming to an end. I will finish up with one post tomorrow, on the final day of December, on what you can do to make a difference in the lives of people with special needs.

I have to say, I personally got a lot out of National Blog Posting Month. It forced me to spend time researching things I want to learn more about, and interviewing people from whom I have a lot to learn. I also enjoyed spreading the word about something I am so passionate about. Writing is therapeutic for me, so to sit down and write every day was something I really enjoyed.

Pictured is three year old Immaculate, who I met in Uganda and who has Down Syndrome. This little girl lit up my life during my time in Kampala. She has the funniest sense of humour and her smile can brighten a room! She has so much potential, if only those in her community would see it.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Library

Below are a selection of books I have read lately, and would recommend, on or surrounding the topic of special needs.

Now I See the Moon by Elaine Hall: The author is the director of The Miracle Project, whose kids inspired the documentary Autism: The Music. Elaine’s son Neal is adopted from Russia and is autistic. He is non-verbal and prone to behavioural problems, but this book was full of inspiration for me. She talks about the break up of her marriage and the countless dollars and hours spent in therapies (some that worked, some that didn’t). I especially enjoyed when she wrote about his break throughs with communication. Although he cannot verbalize his thoughts, they found other ways for Neal to communicate which just astounded me. A really honest story.

The Curious Incident of the Dog in the Night-time by Mark Haddon: This fictional book is written in the first person by a 15-year old character named Christopher, who has Asperger’s Syndrome (on the autism spectrum, although he never comes out and says this in the book). It is a story about him trying to solve a mystery, but the beauty in the book is the way in which he describes the way he sees life. It helps readers to understand what is going on in the minds of people with autism; the thoughts behind the sensory difficulties, outbursts, stimming, and behavioural issues. This book is hilarious, charming, sad, and fascinating. I read it in one sitting and even though it is fictional, I came away feeling more understanding.

The Boy From Baby House 10 by Alan Philps: Vanya was a little boy with cerebral palsy in an orphanage in Russia. Very bright, he was deemed uneducable, neglected, and sent to a mental asylum as age 6. This is the story of how he overcame this abuse and how he later strived in life. This book touched me deeply, and is one that I couldn’t get out of my mind for weeks to come. I kept thinking about Vanya, and how easily kids with special needs, especially in developing countries, can be cast aside. This is a must read; it is captivating and a beautiful story. Also a good reminder of how one’s physical limitations do not always equal mental limitations.

All I Can Handle (I’m No Mother Teresa) by Kim Stagliano: Kim is the mother of three daughters, all of whom have autism. Kim talks honestly and openly about what life is like in her house and how she pushes through when it may seem hopeless. More importantly is Kim's positive attitude and her ability to use humour to lighten every situation. This book is hilarious!

The Horse Boy by Rupert Isaacson: Rupert's young son is autistic, and this memoir takes us through the journey he and his wife went on to try to heal Rowan. Their family went to Mongolia to ride horses and reach shamans in hopes that someone, somewhere, would be able to find a healing.

Out Of My Mind by Sharon M. Draper: Written for a young teenage audience, I still found this book interesting. I am not sure how realistic or fact-based it is, but I did enjoy it. It is fictional, written in the perspective of 11-year old Melody who is severely disabled and has cerebral palsy, but uses a communication device to show everyone around her how bright she really is.

I have already written about The Boy In The Moon by Ian Brown and Messenger by Jeni Stepanek, which should also be included in this list.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

SCH Sponsorship

These kids need sponsors! You can sponsor them at any amount per month through Sarah's Covenant Homes. It costs $150/month to fully care for them, however you can sponsor at any amount that you are able to, for example I sponsor April at $10/month which is all I can afford right now. Every little bit helps, and these kids need and deserve our support! Email Sarah at sarahscovenanthomes@ymail.com to inquire and set up a sponsorship.

Molly is 6 years old and her smile lights up a room. She has cerebral palsy and is unable to sit up on her own. She can't yet walk or talk, but we have a lot of hope for her. Molly is a very pleasant girl; she is quiet and sweet and loves to be hugged and kissed! She enjoys swimming and her body moves much more freely when she is in the pool.


Jasmine was born May 20, 2007 and arrived at SCH in 2009. She does not have any cognitive special needs, although is a bit 'orphanage delayed' due to lack of stimulation and attention in her earliest years. Jasmine is fully blind and will soon be having surgery to get prosthetic eyes. Jasmine will be capable of going to school when she is old enough. She is sweet, but cries often and can be fussy. She has a precious little smile!


Naomi is brand new to SCH and just arrived recently from a government orphanage. Unlike the other kids, I haven't gotten to meet her personally (yet) but just look at her picture- Naomi looks like a heap of fun! Naomi has Down Syndrome.


This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Dick Rutgers

Yesterday I flew to Guatemala City, arrived around 2, and took a shuttle to Panajachel, the city of the beautiful Lake Atitlan. I am writing this post in advance, and scheduling it to publish, so hopefully by now Chris and I are exploring the beauty of Guatemala. Seeing as I am in this country for my first full day, I thought it would be fitting to share the story of a man who has dedicated his life to the special needs community in this country, Dick Rutgers.

Dick works with Hope Haven international and Bethel Ministries in Antigua, Guatemala, partnering with Hermano Pedro and doing outreach to families in rural areas who need support for a family member with special needs, often in the form of providing wheelchairs.

The below video, The Culture That Crawls Part II, shows Dick in action, and also highlights some of the beautiful kids he works with.



The first picture is of Jessica when she first arrived at Hermano Pedro. The second, in September, is when she is healthy again and back at home. Hermano Pedro is an orphanage, as many of the kids have been abandoned due to their special needs, but some kids, like Jessica, have a family to return home to. You can read Jessica's full story, on Dick's blog, HERE.




This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Apps for Autism

Particularly after Steve Jobs passed away, there were a lot of stories in the news of parents of autistic children and adults thanking him because his technology has changed the lives of their kids. This video below was on 60 Minutes and highlights how people with autism can use an iPad to communicate.


In the above video, Beverley School is highlighted, a school for children with special needs just down the road from where I live. This video was particularly interesting to me because it hit close to home- literally. In the Toronto District School Board there are 6 schools solely for children and young adults with special needs, and of course many other schools are integrated.
Park Lane PS K-21
Seneca Public School K-8
Beveley Public School K-8
Lucy McCormick gr 7-21
William J McCordic K-21
SunnyView JK/SR PS K-8

I have spoken to staff at 2 of these schools, and both said they always welcome volunteers for anyone in the Toronto area wanting to get involved!

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Merry Christmas!

Today is Christmas, and I will be spending my day with family, relaxing and enjoying traditions I have done since I was a kid. Some of my best memories growing up are of Christmas- putting milk and cookies out for Santa, waking up excitedly to brag to my sisters that I "heard" the reindeers on the roof, rushing down the stairs at my Gramma's house with my cousins to see the tree. Yes, that nerdy child on the left with the giant glasses is me in kindergarten! Looking at old pictures like this one brings back such good, happy memories. It is at times like this that I can't let myself forget all that I have to be thankful for.

Today I am thinking of all the special kids who have come into my life and taught me important lessons about myself and about who I want to be. I believe strongly that everything happens for a reason.

On my very first humanitarian trip, in the Dominican Republic the summer after I graduated high school, we visited an orphanage in Santiago for children with special needs. I remember walking through the doors to a huge room filled with cribs and beds. A few of the kids were tied to their cribs. Others were lying on the floor. Some banged their heads against the crib wall over and over again, and one had a big bruise on his forehead because of this.

I remember feeling like the breath was knocked out of me. How had I never known that kids lived like this? I spent the day feeling utterly and completely helpless. I met Rosie, who had been abandoned in a garbage bag. I met Luis, who was unable to speak but who was as bright as any other child and who had an adorable sense of humour, teasing some of the volunteers and making us all laugh.

I recently found the below photos on a friend's facebook of that day and all the feelings came rushing back. I would end up returning to this orphanage many times over the coming few years. I haven't been back in awhile, and think about these kids often. I don't think it was by chance that they came into my life.








I am thankful for these kids; thankful that they started me on the road to working with the special needs population and opened my eyes to a world I didn't know existed. I wonder how they are doing today. Do they feel loved? Are they enjoying Christmas in a special way with the orphanage caretakers and with the other children who live with them? Christmas is a special day for many of us, but I think we also need to make it a time to give back to those who are hurting, who are alone, who are outcasted. I wish everyone, especially those kids in the pictures who I have never forgotten, a very Merry Christmas!

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

As a sidenote, tomorrow Chris and I leave for backpacking across Guatemala and Belize. I will be back on January 10th, and in the meantime the rest of my posts for NaBloPoMo have been written and scheduled to post for the rest of December.

Messenger

Someone very wise once said, "What are we fighting over? Land, money. They don't really matter. We're also fighting over religion. But with religion, there's always one basic ideal- we're trying to become better people - and also the belief that there is something greater than us, greater than the here and now. there are many names for that... It doesn't matter how we try to become a better person."

Would you believe me if I told you these words came from an 11-year old?

Mattie Stepanek was born with a rare disorder called dysautonomic mitochondrial mypoathy. His mother, Jeni, has the adult onset version, and his three older siblings died from it. When Mattie passed away in 2004 at age 13, he was a world renowned poet, motivational speaker, and peace advocate. Mattie's mother, Jeni, wrote the book Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs, on his life and legacy.

His motto was 'Think Gently, Speak Gently, Live Gently' and he certainly has a lot to teach the world, even after his death. I remember getting one of his books of poetry from my Nana when I was maybe 13 years old. I remember sitting in my room and reading it, saddened and inspired and awed by this little kid all at once. Even though I was older than he was, being so young I couldn't fully grasp, at that time, the weight and importance behind his message, although I ceratinly do now.

This book is a must read. Not only for those with an interest in learning about life with special needs, but for every.single.person. Mattie has a message that must be heard.

"Let our breath be gentle wind,
Let our ears be of those who listen,
Let our hearts be not ones
That rage so quickly and
Thus blow dramatically,
And uselessly.
let our spirits attend and be
Most diligent to the soft
Yet desperate whisper of
Hope and peace for our world."



This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Struggles

Today I want to write about my struggles in wrapping my head around special needs. I don't remember the name of the boy in the picture with me, but I remember my interaction with him so clearly. I was at an orphanage for children with special needs in Sosua, Dominican Republic, and I saw him lying on the ground. I approached him and propped him up on my legs, and then I paused. What next? He couldn't speak. He couldn't stand, or move his body easily. His eyes didn't focus on me and he was too big to carry.

I remember being overcome with a sense of sadness. What is a life where you can't move, communicate, or do anything for yourself?

I admit that sometimes I still struggle with this. It is rare now, and I usually have enough reasons to put it out of my thoughts, but it is something I sometimes think about.

April, who can't see, stand, walk, or talk. What must her life be like? I try to imagine how she feels, what she is thinking, and I can't do it. Does she find happiness in life? Does she know that she lacks things, like sight, that others around her have? Does she realize that she was abandoned and lives in an orphanage? Does she feel sadness about this? And yet at the same time, my heart is filled with love for April. She has changed my life and I don't know what I would do if anything happened to her. But I do wonder what she thinks, what she is unable to communicate.

By the way, that little boy in the photo, he laughed. I held him under the armpits and bounced him up and down. He cracked a smile, and then out came the most beautiful sound- his laugh. Everyone in the room looked over with big smiles- his happiness was contagious. I felt on top of the world. His life does have value, as does every single other life, no matter what difficulties they have.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Carly's Voice

I am guessing the majority of my readers have seen the video about Carly, the non-verbal, autistic teenager who has used her computer to voice her thoughts. That said, I don't think I can leave this video out of my postings this month. Watch the video below and be inspired by what you see. Let it be a reminder that people with special needs are just the same as everyone else on the inside. They see our stares, our taunts, and our lower expectations, and it hurts.

Carly writes, "I am autistic, but that is not who I am. Take time to know me, before you judge me."



Learn more about Carly at her website, Carly's Voice.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Makenzie's Miracle

When Makenzie was 18 months old she was a happy, healthy little girl. Her mother was putting her into the car seat and at the same time she reached down and grabbed a Goldfish cracker. She put it into her mouth and then began to cry, unhappy with having to go in the car seat. By the time her mom saw the Goldfish, it was too late and Makenzie wasn't breathing. She began performing the Heimlich and calling 911, but Makenzie went limp and the paramedics rushed her to the hospital. When they arrived, she was on a vent and unresponsive. Makenzie had a serious global brain injury and after waking up, spent 5.5 weeks in a rehab program at the hopsital before returning home. Makenzie has made great gains over the past years, but still has many struggles. Her mother kindly offered to share more of Makenzie's story, specifically with her education and her IEP (individualized education program in the US, or individual education plan in Canada):

Four years ago sending my daughter Makenzie to school was the last thing on my mind. After a choking accident caused a very serious global brain injury Makenzie was unable to walk, talk, smile, sit on her own, or even eat. I spent hours day after day consoling, feeding, researching therapy treatments, doing therapy, traveling, and trying to manage her care, take care of my other children, and keep up a house all at the same time. As Makenzie slowly approached three years old, the idea of going to preschool became the talk of the town. I had no idea what sending my little girl to school even looked like or when we would fit another activity into our daily routine. After some convincing by Makenzie’s Early Intervention team I decided to start the process of having Makenzie evaluated by Child Find.

The reality of sending Makenzie to school was a very different reality then I had experienced with my other three children. This was not going to be a simple process of filling out a package of standard contact information, buying a list of supplies, meeting the teacher at sign in day and then off they go on the first day of school with a few kisses and many tears of joy and sadness that your baby is growing up. Instead there where going to be evaluations, specialists, district employee’s, differing opinions, tears of anger and frustration, laws, rights, talk of budgets, red tape, and big words that no parent should ever have to learn the definitions for.

The first three years Makenzie was in school I advocated for her……. but failed miserably. I ended up pulling Makenzie out of school six weeks into Kindergarten and home schooled her for a year. During that year I spent a lot of time educating myself on special education law and Makenzie’s right to a free and appropriate education. I researched integration and least restrictive environment. I learned all of the definitions to the big words and was fluent in a whole new language.

During the summer we moved and I had a chance at a fresh start with a new team. Armed with more knowledge I was bound and determined to concur the IEP process. Makenzie was going to get the education she deserved.

Today Makenzie is in a class with 23 of her peers. She has a one on one aide to assist her at all times. The classroom teacher does a wonderful job of making sure Makenzie is learning and integrated. The special education team is phenomenal in supporting Makenzie outside of the ILC classroom. For the most part communication with the staff has been great. Makenzie also has many friends, uses her walker, and for icing on the cake…..the district even purchased Makenzie a talker for her use at school.

Over the last couple of years I have learned a lot about special education, the IEP, FAPE, IDEA, and how to make it all come together for my child. So without getting into a whole how-to lesson on IEP’s here are a few of the major things I found work the best in this process.

In my opinion the first and most important thing to remember is that even though getting your kiddo with special needs into school successfully can be frustrating it is imperative that you keep emotion out of the picture. This is a business deal. It took me over 3 years to figure this one out and is very hard when you love you child, know what they need, and can’t figure out why there is red tape surrounding so many of the things your child deserves. While we just want our children with special needs to have the same experiences as their peers many of them cannot tell us about their day nor can they independently perform many of the tasks their neuro typical peers can. They need immensely more than other children their age and their goals and education needs look so different then what we imagined. It is emotional. It is hard not to cry or become angry but it is so very important that you do not take those emotions with you to any meetings at the school. Take a deep breath and continue to remind yourself that this is business.

Now that our emotions are under control learning the law is of up most importance. When I started to get serious about my daughters right to an education I had the IDEA statute printed out and bound. It became my new best friend. It is so much easier to “argue” with someone about red tape, procedure, funding, and other legal matters, when you know just how to stick it right back at em’. For example I knew my daughter needed assistive technology (AT) in the form of a talker with eye gaze. I knew the school knew the same thing. Heck it was even in writing after their own evaluation but yet they kept trying to get out of putting it in her IEP because she did not have a device. There were some very intense IEP meetings surrounding this issue but I knew the law that was tucked so neatly into the IDEA about AT and what was legally required on the districts part. The end result…….. A district funded talker with eye gaze at school for Makenzie.

The third on my list of important things to remember is follow up. This is an art. In order to follow up well you need to learn how to write letters. Not just any kind of letter but one that is always positive and fact based. Remember we are keeping our emotions at bay. I follow up on everything. If I talk to a teacher in the hall, have a conversation with the principal on the phone, when I meet with the specialists, and of course follow up is essential after formal meetings. Even if I a fuming mad I always start with thanking the recipient for something. Next I state the facts i.e.: exactly what was discussed, or specific events. I then recount what I heard and understood and sometimes that is it…….just follow up. Other times there is the need to ask for another meeting in order to further discuss a solution to any issues which were not resolved or that need to be corrected in your child’s IEP. If so, just state kindly that you would like to hold another IEP meetings so that the team can more thoroughly address any issues that have come up. Keep your paper trail. It may come in very handy one day!

Last but defiantly not least……. never lose sight of what this process is all about. You’re Child! This is not about professional ego or the need to win. Never let what drives you become about anything but what your child needs and deserves. Remember what you are advocating for and don’t be afraid to ask for help.

There are many organizations out there that will help you navigate this process and most of them are completely free. Check with your state or county organization for specific state resources. A couple of really great nationwide recourses are The ARC and Family Voices. Parent to Parent is a great parent board and Wright’s Law is a wonderful resource for questions on IDEA law.

Take a deep breath and go get your child the education they deserve!

Believe…. Prayer Works

You can learn more about Makenzie at her blog, Makenzie's Miracle.

The following resources are also of interest:
The ARC- http://www.thearc.org/page.aspx?pid=2437
Family Voices- http://www.familyvoices.org/
Parent to Parent- http://www.p2pusa.org/p2pusa/SitePages/p2p-home.aspx
Wrights Law- http://www.wrightslaw.com/

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Autism: The Musical

I watch a lot of documentaries, and I haven't seen one that affected me as much as Autism: The Musical in a long time.

I have watched Autism: The Musical several times. It makes me think of India. It makes me laugh, it makes me cry. It makes me understand autism a tiny bit more, and makes me miss so badly those kids at SCH. The documentary follows a woman who has an autistic son, adopted from Russia. She starts The Miracle Project and over the course of 6 months, works with a group of autistic children and their siblings to put on a musical. The film focuses in on 5 of those kids; telling their stories and allowing us to get to know them.

Part 1 of the documentary is below. It is all on youtube, and you will see the other parts linked after Part 1 is finished.


There is a part when they are introducing Lexi. They show a videoclip of her when she is a toddler. She is at a playdate and she is covering her eyes, rocking back and forth. I couldn't stop thinking of April. I am not sure why, because April can't walk, or even stand, so rocking back and forth is not something she does. But she is autistic, and I got an update on her from a volunteer in India telling me that she is doing well, but her autistic behaviours are becoming more obvious.

And then there is a part when Neal, who is non-verbal, uses a speaking machine to send a message to his mom. I bawled. This made me think of Amanda, one of the older girls at SCH (maybe 12 years old) who is completely non-verbal. I wonder what she would say, if she could.

This post that Sarah wrote, Amanda's Love, and the documentary got me to thinking about how special 'special kids' really are. Before I went to India, I never really understood it. But now, I am thinking about each of the kids I fell in love with, and how endearing they are. How easy they are to fall in love with. Even in the documentary, when Neal's eyes light up after a breakthrough with him, I just want to give him a big hug. And when Lexi sings in that beautiful voice, I think of Christopher and how his songs would bring tears to my eyes (read THIS post about Christopher, he is amazing).
I never knew, before I went to India, how much I could love someone with special needs, and how truly special they are.

This documentary is a must see. It shows you the parts of autism that we all know; the daily struggles, the tears the parents shed, and the heartbreak, but it shows so much more. It shows the potential of people with autism and the light they bring to the world.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

55% Support Needed!

I am going to be a bit shameless right now and ask for your support. As you know from my posts, I am fundraising for an ayah to care full time for April and Molly at SCH in India. These 2 girls are just the sweetest, most wonderful little girls who deserve so much. I have written about April- she has played a huge role in my life and the path I am on. Molly has cerebral palsy and the most beautiful smile.

$2160 is the full cost of the ayah (salary and her meals at SCH) for the year. She has already been hired and her name is Nagendram. We have paid for her salary up until the end of February, but March is quickly approaching and we currently don't have enough to pay for past then.

She has been doing wonders with the girls. They are healthier, happier, and striving. April is learning to walk. Both girls are getting chunkier as they are eating better thanks to Nagendram.

We have been sitting at 55% of my goal for months now. I have put a lot of my personal money into this cause, but can't do it all. I really need to rely on a few other people to help me reach my goal. Whether you can donate $10 or $100, every little bit gets us closer to our goal and allows these girls the attention and stimulation they have been lacking their entire lives.



Click HERE to read a basic overview of this project.
Click HERE to see April learning to walk.
Click HERE to meet Nagendram, the girls' ayah.
Click HERE to read an update on Nagendram.

Christmas is approaching and we all have so much to be thankful for. Some people reading support many causes and others maybe never have donated before. No matter which category you fall under, considering donating any amount, even just $5, to help the future of these 2 amazing girls.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Invisible Disabilities

The following is a guest post from Laurie, the mother of GB and Hope with both have invisible disabilities. You can read more about the girls at Laurie's blog, Adopting Special Needs.


Nikki invited me today to share my two youngest daughters with her readers. I am delighted to do so. GB and Hope are both interracial, adopted, and have special needs. If you met them casually, you would think they were both neuro-typical. They have what are considered “Invisible Disabilities”.

GB is an eight and three quarters year girl with a beautiful smile. We have had her since she was five months old and finally were able to finalize her adoption a year ago. GB was diagnosed with Fetal Alcohol Spectrum Disorder before her first birthday. She started receiving Early Intervention Services when she was seven months old. She received Occupational Therapy, Speech Therapy, and Special Education Services. GB transitioned to a full time special education program before her third birthday, where she continued to receive these services.

GB never slept through the night. She had no attention span and no ability to communicate with people she didn’t know, despite have receptive language skills far beyond her age. Shortly before her fourth birthday, a child psychiatrist in Manhattan diagnosed her with Bipolar Disorder. He put her on an atypical anti-psychotic and she started sleeping through the night immediately. She made amazing progress in her school and we were daring to think that she might be able to attended the neighborhood kindergarten class. Progress was still uneven and GB was unable to handle a classroom with anymore than twelve children in it, even with a one on one aide. It was obvious that we were missing a piece of the puzzle. We took GB to The George A. Jervis Clinic to have a complete neuro-psychological done. We were very surprised at how delayed GB was. We had been making accommodations for the things she couldn’t do without consciously thinking about it. We came home with an additional diagnosis of Autistic Spectrum Disorder.

Hope just turned six. She was originally adopted at five weeks by a white family in Texas. When she was four and a half, the family decided they could not parent her. The paperwork on Hope said she was FASD, Bipolar, and ASD. She was still in pull ups and never used the toilet. We picked Hope up on August 25, 2010 and finalized her the next morning. Only in Texas.

It quickly became obvious that Hope had none of the organic problems that we expected, but rather had Reactive Attachment Disorder (RAD). We made the rounds of developmental and neurological specialists and confirmed Hope was not FASD or ASD. We took her to be evaluated by GB’s psychiatrist who confirmed Hope did not have Bipolar Disorder. To help us with Hope’s RAD we found a psychiatrist who treated young children at a local RTC (residential treatment center) who was willing to take Hope as a private patient. She confirmed the diagnosis of RAD.

The only outward sign that the girls have special needs is that GB has the facial features of FAS. Most people do not recognize it. Part of having RAD is not letting outside people see what is really going on. Hope raged from the day we picked her up. When raging, Hope screams, throws things, kicks, bites, scratches, and hits. The school went from September to May without seeing a rage. Now, what ever behavior Hope is exhibiting at home is seen as school. She lies routinely and is always blaming others for her problems. She will triangulate adults every opportunity she has.

Hope is in a class for behavior disordered children. It is very structured and run by the Rockland County Children’s Psychiatric Hospital. Hope is repeating kindergarten as she lacked most experiences and every day knowledge the other kindergarteners had last year. She seems to be capable of doing the work when she choses to, but has a lot of emotional work to do to heal. A lot of times, the emotional work takes most of her energy. The abuse and neglect that she suffered when living with her first adopted family is slowly starting to surface. There are many days when that is all Hope can handle. Hope has therapy twice a week in school and once a week privately. She sees the psychiatrist at least twice a month. Her team says it will be years before we make real progress. Besides raging, Hope is unable to make or sustain friendships or do anything, including playing, without adult involvement. There are signs of hope. GB and Hope are starting to build a relationship. Hope is taking a weekly dance class that she absolutely loves. It is the only time we see a genuine smile on Hope’s face. It is something we can build on.

GB attends a class for autistic children in the same school as Hope. Her social skills are much better than the children in her class. She mainstreams in a reading group that has 3 other children in it. Her reading is on grade level, although her writing requires a lot of support. GB struggled with math until her teacher adopted the *TouchMath* program and her math skills have soared. She is well liked, both in her class and among the typical students from the regular classes. There are seven other children in her classroom, all autistic, with varying degrees of impairment. GB receives speech three times a week, focusing on word retrieval and broadening the “scripts” she uses to interact with her environment. She attends a social group every Saturday with other high functioning autistic children. She has several neuro-typical friends her age, that she has had since she was three. The gaps between her and her friends have become more pronounced in the last two years. I work hard on setting up situations that GB can cope with that also help maintain these friendships.

GB has taken gymnastics since she was two. We found a small, non-competitive gym that works very well with special needs children. When she first started, they put an extra instructor in with GB and if GB could stay with the group for a total of five minutes out of every hour class, it was consider a success. GB is now in their most advanced class, which is an hour and a half long. She has no extra assistance and usually maintains herself for the entire class. It is a small class and the other girls know she is autistic. GB is accepted and the girls treat her with empathy and respect. Last week GB did her first unassisted backbend from a standing position and the girls cheered and high-fived her.

The girls’ “Invisible Disabilities” have made it difficult over the years to get the services she needed. Excellent documentation and record keeping, coupled with the willingness to hire a lawyer when necessary have gotten us to the point where both girls are in appropriate placements.

I do not socialize with most of my neighbors or the parents of children who attend my daughters’ school. I am considered pushy and over protective by most of these people. They are sure if I “just let her” either of the girls could handle scouts, soccer, baseball, and whatever else with no problem. GB and Hope are my second family. My older children are grown. I learned from my first family that I knew my children better than anybody else and none of the advice given by parents of neuro-typical children applied to my not typical kids. My husband and I are in our mid-fifties and don’t have much in common with most parents who have 8 and 6 year old girls. I have developed a talent for cutting off inappropriate questions almost before the person speaking has finished asking. Although I am very particular with what I expose the girls to, I am also very open, with them, about their conditions, challenges, treatments and necessary modifications. As a result, GB tends to compensate for and work around her disabilities. This is not as true for Hope, not only because she is younger, but also because we have only had her sixteen months. Hope is just beginning to get the idea that there is a bright future ahead of her.


This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Interview With Maddie McCaleb

Maddie is a fellow volunteer and supporter of Sarah's Covenant Homes. Like me, this experience changed her and she is returning this month. She also volunteers her time at home with a program for young adults who have a disability. She talks about this below.

1) Tell us a bit about the program you volunteer with. What is the time commitment, what role do you have?

For the past year and a half I have volunteered with Young Life Capernaum. If you know about Young Life, its basically the same model for teens and young adults with special needs. We do club once a week where we play games, sing songs, do a skit and listen to a talk about Jesus, we do contact work, we go to camp... Every night at club, we do our best to keep a 1:1 ratio. "Buddies" come and volunteer and our "Friends" get to hang out with them all night.

These kids are AMAZING. Honestly, they are some of my best friends in the world. This year, I am a leader which means I get to spend more time with them than ever. I help plan clubs, next semester I will start giving club talks, I have breakfast with them and go to their birthday parties.

2) What is the most rewarding aspect of volunteering with the special needs community?

I think there are so many rewarding aspects of volunteering in the special needs community. Its hard, but its seriously life changing. I think that it teaches you to love with persistence. Some kids will latch onto you immediately, but so many require weeks and weeks of hugs and love and communication before barriers come down. Maybe its just a smile or a high five, but its so worth it.

I also think that getting the chance to see the world through the eyes of a person with special needs is something everyone should get to experience. I just got back from three days of camp with my Capernaum kids, and even though I have finals week ahead of me, I feel refreshed and at peace. It really gets your priorities right and sets your eyes in the right place.

3) Are there any challenges that you deal with?

Oh my goodness, there are so many challenges.

There are tears and occasional emotional breakdowns. There are the more serious seizures and panic attacks. There are hundreds of medications, case workers, slow conversations and of course, relationship drama.

But I wouldn't trade any of it.

A lot of those things you just get used to. To me its normal to worry about seizures, to plan on waiting three minutes before my question is answered and to put up with seemingly insignificant fights between friends. The reward is SO much greater than the cost, and I wouldn't have it any other way.

4) Lots of people want to get involved in supporting those with special needs. How do you suggest they get involved?

There are so many ways to get involved. For someone who hasn't really worked with the special needs community, I would recommend giving yourself time to get comfortable. Its a new way of communicating. Its almost like a new language. Find a place that you are comfortable and start helping out consistently. Give yourself time for a breakthrough.

For someone who doesn't necessarily want to volunteer but wants to support the special needs community, I would highly recommend that you check out websites like r-word.org where you can learn about ways to stop offensive language and make a pledge to spread the cause. Changing the way we speak about special needs is the first step to changing the way we think about it, so read up on ways that you can help!

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

The R Word Part 2

Since my previous post on the word "retarded" and the campaign Spread the Word to End the Word, I have found even more awesome resources and posts on this subject that I want to share.

Melissa's daughter has CDG, Congenital Disorders of Glycosylation). You can read her thoughts on the word retarded at her post, The R-Word (trust me, it's a great read).


Melissa shared the video below. So touching, so wise:


Another great video (it won't led me embed) on Rosa's Law, a law signed by President Obama advocating to change all uses of the word 'retarded' in all federal health, education and labor policy and replace them with “individual with an intellectual disability” and “intellectual disability.”

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Katerina's Story

Meet Katerina... "Katie".


It is clear that this little girl is malnourished... In this photo, she was near death. It is clear that she knows neglect. That she is failing to thrive. How old do you think Katie is? 1..2... maybe 3? Katie is 9. No, that is not a typo. Katie is 9 years old and 10 lbs. She has Down Syndrome, and because of this has been neglected all her 9 years. Left in a crib with only enough food to barely live off, she stopped growing, stopped developing. This is NOT due to her Down Syndrome; this is neglect.

Just last month, Katie's new family adopted her and brought her to the States. She went straight to the hospital from the airport where she spent time being monitered and set up with a feeding tube and a special diet. She is now home with her Mom, Dad, brothers and sisters. Just look at this change... the miracle of adoption.



A recent update on Katie from her Mom: "They told us she couldn’t grow. The child grows. We are watching her grow. There is soft roundness where two weeks ago she had thin, dry skin stretched over her bones. Her legs were in such a shocking state that we kept them covered during the travel home so nobody would misread the situation, and report us to the authorities for child neglect. Even if they thought that “She’s nine-and-a-half” meant months and not years."

Go to The Blessing of Verity to follow Katie's story.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

The Boy In The Moon

The Boy In The Moon by Ian Brown is one of the best books about special needs that I have ever read. It is written by the father of Walker, a young boy with a severe disability called cardiofaciocutaneous syndrome (CFC).

Amazon gives the following description of the book: "Walker Brown was born with a genetic mutation so rare that doctors call it an orphan syndrome: perhaps 300 people around the world also live with it. Walker turns twelve in 2008, but he weighs only 54 pounds, is still in diapers, can’t speak and needs to wear special cuffs on his arms so that he can’t continually hit himself. “Sometimes watching him,” Brown writes, “is like looking at the man in the moon – but you know there is actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me?” In a book that owes its beginnings to Brown’s original Globe and Mail series, he sets out to answer that question, a journey that takes him into deeply touching and troubling territory. “All I really want to know is what goes on inside his off-shaped head,” he writes, “But every time I ask, he somehow persuades me to look into my own.”

This book brought me to a deep point of reflection. It brought me to tears. It left me with a sense of peace, strangely.

Below is an except from Ian's website. I encourage you to go to The Boy In The Moon's website and watch the videos and read the stories to learn more about what raising a child with a severe disability is like:

His infant head was overlarge and shaped like an olive, but the rest of him was as light as a loaf of bread: I could carry him in one hand. I called him Boogle, or Beagle, or Mr. B, or Lagalaga (because he made that noise), or simply Bah! (He liked B sounds.) Later, as he grew older, we developed a private language of tongue clicks that only he and I speak: All we ever seem to say is, "Hello, it's me, I'm clicking to you, and only to you, because only you and I speak Click;" to which he (or I) reply, I think, "Yes, hi, I see you there, and I am clicking back, I like it that we speak our private language, in fact I find it hilarious." This is very enjoyable for both of us.

I could clap my hands and he would clap back; he especially liked it when I clapped his hands faster than he ever could on his own. He hated having his face touched, but loved his bath: The water seemed to ease his movements, float his knobby joints. It was impossible to take a decent photograph of him, except by chance, and then he looked like Frank Sinatra Jr. on a tear. He smelled warm, baked: His head to this day has the tasty whiff of a Zagnut bar. He never crawled, but began to walk at 2 1/2.

The house was a well-organized nightmare. You couldn't survive as the parent of a handicapped child if you weren't organized, and my wife was. There were laundry baskets of toys on every floor; plastic contraptions hanging off the backs of chairs in the kitchen and the living room; tubs of syringes and feeding lines upstairs and down; caches of diapers in a chest by the front door; troops of medicine bottles and ointment tubes; vomit stains on everything.

He loved to touch things. The bottom three slats of every window blind in the house were mangled. His most developed consciousness seemed to live in his hands, in what he could manipulate — the genius light switch, the fascinating toilet paper tube, anything that beeped or flickered. What he could touch he knew.

To teach him to walk, we undertook a costly and radical Venezuelan therapy three times a week for two years. The Medek method entailed hanging him upside down and pulling his legs into unnatural positions. He started screaming the moment we pulled into the driveway, but he learned to walk. At least he had that. He could be what his name said he was. Maybe that was why we insisted.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

This Is Lovely, But...

The following is a post by Julie Cole, co-founder of Mabel's Labels (the awesome company that kept me employed through University!). You can view the original post on The Mabelhood. One of Julie's children was diagnosed with autism, and I think this post is one we all need to read to re-evaluate our standards and the way we treat people on the spectrum.


I have people send me this link regularly:



I’m always so chuffed when people take the time to forward something that might be of interest to me. Have a look – this clip is a beauty. A lovely teenager with autism gets his chance on the basketball court and absolutely shines – elevated to hero status by his supportive peers cheering him on. It is truly moving.

It also annoys the crap out of me.

When I see this clip, it makes me want to scream “So what? You think the only thing a kid with autism can do is fetch water for the team?” Why, oh why, did it take so long to get that kid on the court? Why, oh why, is there such shock that he can actually play well?

I think a part of it is that a lot of assumptions are made about children with autism, the most popular being that children with autism have learning disabilities. Nowhere in the diagnostic criteria for autism is there mention of learning disabilities. Basically, if a child with autism appears to be LD, chances are the professional team needs to shape up and find more effective teaching strategies. So, it’s time to stop being shocked when you meet a kid with autism who is “smart” (whatever that means). There is no reason for that kid not to be.

I’d be fine if my kid had LDs, just so happens he dodged that bullet. But either way – autism or LDs, I’d expect him to have a shot at being on the basketball team. My kid is doing the regular Gr. 5 curriculum. He started French Immersion this year, is a helpful big brother, has fun with his friends, goes to Cub Scouts, loves the ‘Bone’ books, has a growing RESP for university, drives me crazy on his Nintendo and plays an awesome game of hockey. Note that water boy duties do not make the list. I do recognize that the kid in the video gained a lot from his role as team “manager” – it provided him with the opportunity to be involved and feel a part of the team. But there’s a lesson to be learned here about expectations. Let’s set them high, folks.

I don’t want to take away from the awesomeness of this clip – the community spirit and the raw support for this kid is out of this world. I really did cry….moments before I got a little annoyed.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Jaxson's Fight

Jax is a 6 year old boy and the son of Lacey. She writes that "Jaxson was born on Nov.20 2005 with Trisomy 21. He has spent half of his short life in the hospital. He has heart defects, pulmonary hypertension, severe reflux, sleep apnea, and a hypoxic brain injury that resulted in severe siezures." Jax is a trooper, and Lacey generously offered to share more of his story for this blog:

Jaxson is my 6 year old son, and he has Down syndrome. He has several medical problems, and his little body works very hard just to stay alive. He has congenital heart defects, pulmonary hypertension, severe lung disease, tracheal and bronchial malaysia, sleep apnea, seizures from a brain injury, severe reflux, gut immotility, a clotting disorder, severe osteoporosis, already causing a break in his femur bone. His spine is starting to curve due to lack of being able to hold himself upright at all.

He has a trach, oxygen, feeding tube, and a ventilator to help him breathe at night. He has more equipment, and uses more electricity, than everyone else in the family combined. He costs thousands of dollars a month just to keep alive. The equipment in his bedroom is only seen in ICU rooms, not even in a typical hospital room.

The machine that keeps Jaxson alive:

Jaxson doesn’t wake up at the same time every day. Sometimes he wakes up before he sun even comes up. On those days, I have medications I can give him so he’ll go back to sleep. When he wakes up, I have to get up, because his alarms go off and he requires a lot of suctioning. The meds don’t always work, and make for one tired momma. Since Jax has gotten the trach, my average sleep a night has been cut in half. Let me just say now that I don’t get a single second of nursing care help for Jaxson! Usually around 8 is when I take Jax off his ventilator and put his trach nose and oxygen on. I turn his feeds off, change him, and take him down to the family room. He always requires a lot of suctioning in the morning, after sleeping all night. So that’s what I spend most of my time in the morning doing, and getting my coffee! 9 is when I start getting his meds ready. Jax has over 20 medications a day, they vary depending on how he is doing. Some medications are as needed, and some stop for a while and then start back up again. Most of his meds have to be crushed and mixed with water. He has a shot, nebs, and inhalers that he also gets. It usually takes me about an hour, again, depending on what meds he is getting at the time. I bath him every other day, but every day I change his trach ties, and his dressing on his gj-tube. I can change the dressings pretty quick. If you add the bath, his morning cares take about an hour. After his cares I get his feeds set up. He gets a formula through his gj-tube, he takes nothing by mouth. Normally he gets bolus feeds 4 times a day that run over an hour. But right now he is on continuous feeds, meaning they run all day long. We can’t put anything into his stomach right now, because his surgery to prevent reflux is not working, and he’ll aspirate anything in his tummy.

Because we just moved, he doesn’t have any therapists set up yet. He normally has OT and PT once a week. He has a stander that I have to put him in every day. Even with that, he is starting to show signs of not being upright and on his feet. His spine is starting to curve, and his hips are starting to pop. Things we need to bring up with an orthopedic doctor. I try to leave him in his stander for an hour, depending on how much he will tolerate. If he cries, or acts like he’s upset, I take him out! If he has doctors appointments, those take up pretty much the whole day. Driving, waiting, being seen, and then coming home is a full days event. Most of his specialists are an hour away with good traffic. Any time we go out, we have to take oxygen, feeding supplies, suction, our emergency kit, and sometimes a pulse oximeter. Our emergency kit has extra supplies in case something happens. An extra g-tube, trach, and supplies that go along with them.

We get tons of supplies sent to our home every month. A lot come by UPS, and a driver will deliver his oxygen tanks. He has a respiratory therapist that comes by once a month to check his vent and make sure everything is running the way it should. I just bought a supply rack that has been a dream! In fact, I need to go get one more. I’ve been able to sort and label his supplies so we can easily find them. So great for a busy kid that needs organization!

Evenings seem to be the quietest time. Jax doesn’t usually need anything, besides suctioning. That’s my time to get other things done. The bad part is sometimes I relax for too long, and get started on his night routine late. That is hard because then I don’t get to bed until 11 or 12.

I try to start Jax night routine at 8, after I put Arina down for the night. I have to give him a liquid suppository, because he can’t poop on his own. Then we put his jammies on. Nigh meds are next, which again, many have to be crushed in water, or done as a nebulizer treatment. If he is on Tobi, that takes a half hour by itself.

Jax night meds on this particular night. 3 are nebs that take about 20 minutes each:

When we put him in bed we have to hook up and plug in all his machines to charge for the night. His suction, feeding pump, and pulse oximeter. We have to take his oxygen off, plug it into his ventilator, and put the ventilator on him. Put his pulse ox on, connect his night feeds, and put a bile bag onto his g-tube so his tummy can let extra air out while on the vent. He has a whole mess of wires in his bed at night. Luckily, he doesn’t roll around much, so we don’t have to worry too much about disconnecting tubes! If he doesn’t fall asleep in a half hour or so, we’ll give him melatonin or trazadone to help him sleep.

Even though Jax is 24 hour care, and a million dollar kid, I wouldn’t trade him for the world. He shows me everyday just how strong he is. There have been many times that we thought he wouldn’t leave the hospital.

But he always fights his way back and amazes the doctors. His smile lights up a room! Because of him we have connected with so many other families, and made some fantastic friends. He truly is our little angel!



You can follow Jaxson's story, and that of his sister Arina who has Down Syndrome and was adopted from Ukraine, at Tales Of A Knight And A Princess. Be sure to check out the post I'm The Same.

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

One Tough Cookie

Below are the stories of two beautiful girls, both with cerebral palsy but with very different stories. Please watch- really touching videos. What I found interesting was how both families used the word "lucky" to describe their situations. I have also included some info below on cerebral palsy so you can educate yourself on what it is.





Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, special equipment, and, in some cases, surgery can help a child who is living with the condition.

There are three main types of cerebral palsy:

Spastic Cerebral Palsy
(stiff and difficult movement)

Athetoid Cerebral Palsy
(involuntary and uncontrolled movement)

Ataxic Cerebral Palsy
(disturbed sense of balance and depth perception)

This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

Table for 12

Table For 12 is a show that aired on TLC from 2009-2010. It chronicles the lives of Eric and Betty Hayes and their 10 children; twins, twins, and sextuplets. One of the sextuplets, Rebecca, has cerebral palsy.

I admit I am a sucker for most TLC shows, especially ones like this that follow interesting families. I particularly liked this one, while it was on, a) because the family seemed so much more down to earth than other similar shows like Jon and Kate Plus Eight, and b) because of Rebecca. I love that TLC spotlighted a family with a child who is developmentally delayed. I find in the media when special needs people are portrayed, it is rarely people with cognitive impairments, but much moreoften those with physical impairments (ie the TLC shows on people with dwarfism).

Rebecca is legally blind, unable to speak or stand, and has been diagnosed with cerebral palsy. It warms my heart to watch this show because her family's love for her is so apparent. It also makes me happy that such a positive image of a family with a special needs child is being shown in the media. I think it could change the perspectives of people watching, and make cerebral palsy seem a little less intimidating.

The series of videos below is an episode that focuses on bringing Rebecca to horseback riding therapy. Part 1 includes an interesting interview with her parents on raising Rebecca. In Part 3 they show her being evaluated and then riding the horse for the first time. It's a great watch!





This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.

The Walk

My time at Sarah's Covenant Homes in India really did change my life. Certainly it wasn't without challenges, but working with April brought this deep sense of fulfillment and purpose into my life. Something about it felt very right, and a year and a half later, as I plan my return, it feels even more right than it did then. Something is pulling me very strongly into the direction of working with the special needs community, and I attribute this to my time at SCH.

Many other people feel the same way. Katie Zenger has volunteered at SCH twice now, and, like me, has been changed by these children. I asked her to share her experiences:

She and her husband, Kody, made this video, The Walk: The kids at Sarah's Covenant Homes love to go on walks. Simple as that. These walks are grand adventures full of smiles, squeels and experiences that keep them smiling for hours and hours. Here is a short about one those adventures. Both boys were abandoned as babies and raised in the Gov't orphanage in India until Sarah got them in Dec. 2009. Both boys were very malnourished when we got them. The little guy with all the huge smiles and giggles in the beginning, his (blog) name is Jeff. He's the little one who got so sick this summer with Typhoid. It is very difficult for him to eat food by mouth because of his spasticity. He does eat but not much and he's pretty thin. He is one of a handful of children we are praying God will make a way for us to get them G tubes. The other little guy who claps his hands together toward the end, his blog name is Aaron. He also has spastic CP but he is able to stand with his braces on. He is such a smart, funny little boy! They both are. You can always count on a big greeting from Aaron when you walk in the room... loud excited noises, scooting on his bum with his hands in the air!


This post is one in a December series of National Blog Posting Month, where I am advocating for children with special needs. To make a difference in the life of someone living with special needs, check out THIS POST.