I’m raising a child that has an abnormal brain, and I am neither a neurologist or neuroscientist. My lack of understanding of the brain function has made it challenging to find the right doctors to help him. More than a few times I have been online in the evening reading up on the brain, the
Wednesday, 15 November 2017 / Published in Parenting, Parenting Advice, Special needs parenting
Parents of children with special needs struggle with a lot of areas of development for their children. There is one area that can be difficult for us to discuss openly. We can quickly discuss milestones like crawling, walking, and talking with people in our life. However, incontinence and potty training can be a sensitive topic
Recently I sat in a doctor’s office with my son and my husband. We were looking at images of his brain, and discussing the litany of symptoms my son was facing. After a long appointment, the choice was clear for everyone, my son needed to have major surgery to repair malformations of his brain. While
Saturday, 11 November 2017 / Published in Parenting, Special needs parenting
The U.S. Census Bureau reports that about one in five people in the United States has a disability. If you are a parent of a child with special needs, then you want to do everything in your power to protect that child. Unfortunately, you may not always be around to provide the care and support
Thursday, 09 November 2017 / Published in Disability Advocacy, Resources, Special needs parenting
  Finding Funding for your child with special needs is not an easy task. We have put together a comprehensive list of government and non-profit financial assistance, grants, and scholarships to aid in the cost of your child’s needs. You will find cash assistance, nutrition assistance, technology & equipment assistance, and grants for bills and
Wednesday, 08 November 2017 / Published in Mom, Parenting, Special needs parenting
November is the month of “Gratitude” for many in the United States. We sit around a table with family and friends, and we reflect and celebrate the gratitude and thanks we feel for our lives. Our social media feeds fill up with “30 days of Thanks” posted by friends and family. People all over are
Monday, 06 November 2017 / Published in Parenting, Parenting Advice, Special needs parenting
How do you know if your family is complete? When you have a child with special needs, do you dare try to conceive another? When life is so abnormal, does another baby throw life into more chaos? Over the years of being a parent to a child that is autistic and medically fragile, these questions
Your child qualifies for an IEP or 504…Now what? Get educated and find resources to aid you in the process. We located 12 websites that offer templates, information, advocacy, and IEP planning. All of these will aid you in being the most informed you can be for the meeting. Knowledge is power, and knowing your
When I was a child, I watched this hilarious episode of Seinfeld. Jerry was going to a cabin, and along the way, there was a fan that wanted to meet him. The fan was a child that was chronically ill and lived inside a bubble. As with most Seinfeld episodes, it took some ridiculous twists
Advocacy is defined as the act of pleading, supporting, or recommending.  For many parents of medically fragile children, advocacy is a skill that is learned as they develop teams of doctors, nurses, and therapists. We learn to navigate a tricky hallway where there is a professional at every door telling us their opinion. Unfortunately, in
Thursday, 02 November 2017 / Published in Autism, Parenting Advice, Special needs parenting
By: Annabelle Short Sometimes, there are those days – especially on Monday’s or on a cold and rainy morning – where the second my alarm goes off I am already thinking about the nap that I won’t get to take that day… Rather than waking up feeling rested and ready to start the day, I
When I was young, my mom always told me that I should be in the FBI. I was still excellent at finding answers to allusive problems. Nothing ever seemed to get past me. I have quick quit, drive, and determination to find solutions to the hardest questions. These attributes as a child foreshadowed what I
Monday, 30 October 2017 / Published in ADHD
Mommy wars aren’t just fueled by moms against moms, but the war is precipitated by society against moms. There is absolutely no happy medium if you are a mother, and most of us feel like we have to constantly defend our choices. For many mothers one of the most difficult choices they will make is
Emergencies have become a standard activity that is littered throughout my day as a mother of a chronically ill child. I feel like I am always putting out a fire that is creeping inside the body of my child. Whether it is his gastroparesis flaring and making his stomach hurt or giving him terrible gas,
By: K. Rielly In the heat of the moment, when those “terrible two’s” begin to take hold of your child for the first time, it can be tough to recognize what is happening versus what it “feels” is happening. But that outburst isn’t coming from a place of disrespect or disobedience; it’s an outburst of
By: Maggie Murray When someone is grieving it implies that they have lost something. They’re in mourning. They’re trying to adjust to their new world and desperately trying to determine if they will ever find a place in it again. Despite not physically losing anything or anyone, the grief experienced by parents whose children have
My son’s health and development have always been a puzzle that doctors can’t figure out. He is both Autistic and medically fragile. All too often severe medical symptoms were dismissed as characteristics of Autism.  I have witnessed his health decline, watched doctor’s scratch their heads and blame autism, and have been a mad woman trying
There’s a very famous poem called “Welcome to Holland,” written by Emily Perl Kingsley. It’s a beautiful poem if you haven’t read it. To summarize, Kingsley describes what it feels like to raise a child with special needs. She says that planning for a child is like planning an exciting trip to Italy. But when
Sunday, 22 October 2017 / Published in Disability Advocacy, Educational Info, g-tube, Resources
Finding Clothing for Children & Teens with special needs can be challenging. Here is a comprehensive list of online clothing retailers with Adapted Clothing. Abilitee Adaptive Wear –  clothing with g-tube access newborn – 14 Able Apparel – Adaptive Clothing Able to Wear – Adaptive Clothing and wheelchair adaptive clothing Adaptations by Adrian – Adaptive Clothing for all ages
The room was a bright white. The kind of white that is stark, bare and void of any personality. Above us was a square that worked as a track for a large camera that moved around the room. In front of us was a bed that was as white as the room, with white tissue