Wednesday, June 18, 2014

The Truth About Trying

I'm trying to be a Hopeful Parent. That being said, I recently attended a high school graduation, the very high school my son attends, in fact. The valedictorian said one thing she learned in that high school was there was only do or don't do; there was no "try." So I guess you could say I'm "not doing hopeful" very much these days.

I should have thought of all this before I had a special-needs son born in July. I should have done the math; run the numbers. "Let's see, if he has special-needs, is born in July, and turns 18 before starting his senior year of high school, that will be perfectly timed with all his typical peers applying for college. I will be able to apply for guardianship, SSI and Medicaid AT THE EXACT SAME TIME as my friends' kids are applying for college. While they fill out FAFSA forms, rob Peter to pay Paul and have their kids applying for every imaginable scholarship, I will be using our life savings to pay an attorney to strip him of his civil liberties."

But of course, one does not plan for these things. These things "happen." And when they first "happen," you grieve, kick and scream, shout at an unjust God and eventually, move on. But it's the unrelenting need to keep moving on, over and over and over again as the parallel lives of those around you never intersect with what's going on in your own, that's the part that will bite you in the ass. No one tells you will heal, only to be re-injured. Only to heal again. Only to be re-injured.

My son and I were recently in our old neighborhood. I took him by the house where a friend used to live, and where we visited when he was a newborn. "That's the house where I got into the car with your sister, and my friend followed me out to the car with you in your car seat and she said, 'Did you want to take your son, too?' That was the last time I forgot, for even a second, about you."

And that is the gods' honest truth.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Wednesday, June 11, 2014

The Village People

No this post is not about the group nor am I going to burst forth into a really bad YMCA routine.

What it is about is my village.  And the people who make it work.  Monthly, weekly, daily, and sometimes minute by minute.

When you have a child with special needs it truly takes a village to rally round and hold down the fort.  When you have two children with special needs your village gets really really big.  I'm thinking of applying for my own state.

Even though the roads to my village are rarely paved and down right pothole-ish at times I have had people come and make it their home.  They are the unsung and unappreciated heroes who often get the thankless jobs and have to deal with me.  I'm not the easiest person at times.  I have little patience for the ridiculous, will ask endless questions to get the answers I seek, and will call and badger a person to death to get what my children need.  I also have a bit of a temper when having to deal with a person I know is capable of more and they refuse to give it their all.  Fun times, eh.

But despite that these people have stuck by me through it all.  When I started this journey I had broad assumptions of who would be there and who wouldn't.  Well let's just say I have been surprised time and time again.  I know that the road is rocky but most of the people who I thought would stick by me dropped our family and ran.  But I also met and made friends with some incredible people along the way.

So this post may start sounding a little Miss America-ish and if you want to stop reading right here and go watch TV that's OK.  You just won't be on my list.  Haha.  Just kidding.  Maybe.  Anyway here is a shout out to my village.

My family.  Seriously, if I don't place them at no. 1 I may be disowned.  But really they have been there for me.  My family has grown and changed in amazing ways this past year.  I have discovered a whole new branch on my family tree.  Very cool stuff!  But mom and the hubs are still number one!  Mom has been so awesome and checks in on me on a regular basis.  The kids adore her.
Shannon is a great guy.  He also adores his kids.  We may disagree on little things, like I prefer the toilet paper on the toilet paper spindle and he prefers to have me play where is the toilet paper today in the bathroom, but I can always count on him. 
I also couldn't have made it through the last year without Cary Lynn's nurse.  One of her favorite phrases is "It's all good."  She has kept me sane and made sure that Cary Lynn remains in one piece.  She is a nurse so she knows a lot about the medical side of it all and keeps it pretty real.  She is also as hard as heck to get a picture of so if she reads this she will be relieved to know that I couldn't find a current one.  I am going to have to start stalking her with a camera next week.  

My children's therapy team.  We have a really great team.  Most of my children's therapies happen at Brooke Road.  The therapists have their work cut out for them as my children can be uncooperative about 90 percent of the time (their asleep the other 10 percent).  But through it all they have pushed my kids and gotten amazing results.  I also handpicked Cary Lynn's vision therapist and we just love love love her!  She is the only early intervention person I have left and despite my strong dislike of how EI  is run where we are she is one of the reasons I have hope for the program.  

Children's Home Society and Noah's Children.  Two organizations that have had a big impact on our family. CHS facilitated the adoption of Cary Lynn but have really helped me advocate and get services for Marvin. They check in on me on a regular basis, help me wade through endless paperwork to get services, provided us with a family counselor to help Marvin with trauma issues, and introduced me to a rocking mama who adopted two children from them!  She has grown into an amazing friend and we are wading through the adoption journey together.  

Noah's has also been really helpful in connecting us to a community of people who are going through many of the same struggles of having medically complex children.  They visit, call, and have provided our children with music therapy.  They are also starting a pet therapy program and we are super excited to have visiting dogs.  The events they do for families are amazing and they are sending my son to camp this summer so he can just do something normal.  Something that other kids his age get to do.  When you live my life normal isn't a daily occurrence.  So letting him have time to breathe and be a little boy is a huge thing for us.  

Buddy Break and members of Trinity.  The special needs program is amazing but what blows my mind is that even though we don't attend there right now is that they still check in on me, involve our family, and just love on us.  We have a good church right now.  And lots of love from some of the folks at CVAG.  It is good to know our family is loved and cared about.  Plus many of the families at my last job who have brought me countless hospital meals and spared me from another night of Subway.  

They are last on the list but certainly not least.  My mom support group.  I was so lucky to find them.  They have been in the trenches and can change a g-tube blindfolded on burning coals.  They answer questions, calm fears, and most of all support each other.  I have seen lots of other groups henpeck and get ugly.  I have yet to see this group do that.  They support each other, kind words and encouragement are given freely.  When I have a bad day they offer support.  When I have a good day they celebrate with me. Because of them I have reached out towards others and come alongside of them on their journeys.  They help bring out the best in me.  

These people aren't everyone in my village but they are the heart of my village.  As I add people to it and become part of other villages my life and my children's lives become better for it.  So thank you for all that you guys do.  You have made a difference in our lives!  

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Amy Fields is a mother of two special needs children.  You can follow her on her blog, Many Kinds of Families.  

Sunday, June 1, 2014

What Family Caregivers of Children with Disabilities Need to Know about Wellness & Prevention

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Families of children with disabilities may be overwhelmed with multiple appointments to specialists.  It’s difficult to remember about wellness and preventive care but this is important to overall health.   

Parents are the experts regarding their children as they are with them 24/7.  It is often the family that first notices something is off.  The American Academy of Pediatrics has information on screening at  The Centers for Disease Control’s (CDC) project Act Early has checklists for parents at  First Signs also has good information regarding concerns about a child at 

Vaccine preventable disease is an important component of wellness. The CDC has immunization schedules at  It is important to note that children with developmental disabilities or neurological disorders are at high risk for flu complications (see

Dental Care
Oral health is essential for overall health.  Cavities can cause bacteria to spread to the bloodstream with serious complications.  Children with special needs may have difficulty with dental care due to poor motor skills or medications which affect their teeth.  Bright Futures has a Pocket Guide at  The AAP also has information for families at  or Spanish  Tips for families of children with special needs can be found from Autism Speaks at and also from the Vanderbilt Kennedy Center at  For families without insurance, Donated Dental Services has free dental care at and Smile for a Lifetime has free orthodontics at
Early detection of hearing loss results in better outcomes.  The CDC has information for families at  There is an Early Hearing Detection and Intervention Program in each state found at  The U.S. Department of Education has a guide “Opening Doors: Technology and Communication Options for Children with Hearing Loss” at or Spanish

Vision Care
There is Commission for the Blind or Visually Impaired in each state, usually found under the Department of Human Services.  There are also resources for families who do not have insurance such as New Eyes for the Needy at, One Sight (English/Spanish) at

Mental Health  
The National Alliance on Mental Illness has a Child & Adolescent Action Center at  They also have workshops and support for parents of children with challenging behaviors at .  The U.S. Department of Health also has the “Family Guide to Systems of Care for Children with Mental Health Needs (English & Spanish) at

General Wellness 
General Information can be found in Family Matters:  Promoting Health & Wellness for Children with Special Health Care Needs Family Booklet at or Spanish  The CDC also has “People with Disabilities: Living Healthy” at  Lastly, there is a Bright Futures Activity Book for children (English/Spanish) at 
Families of children with special needs want the best care for their children, and this includes prevention and wellness.    The next blog will focus on physical activity and nutrition for children with special needs.
Additional Resources
Family Voices-Impact Project (Bright Futures for Families)-wellness/special needs
Maternal/Child Health Knowledge Paths (various topics)-family resources

Remain Hopeful, 



Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB