Hi! Welcome to Special Needs Parents Income! I’m Deena, fellow special needs wife and mother. My story is unique, as all of ours are, and although it is filled with great heartache it is also filled with great love and determination too. Like you, I’m the Captain of our special needs family. I run the ship, keep us afloat, and come up with creative ways to plug up any leaks that spring up from time to time, and there are many!
The journey begins…
My journey began in high school when I met the love of my life and spouse of 20 years now.
At the time, we didn’t know that there was a genetic disease lurking underneath, ready to steal our dreams at the prime of our lives.
That’s us there ——–> Isn’t he cute?
In his 30’s my husband started to change, very slowly. By the time he turned 40 he was unable to sit still, started performing poorly at work, was angry, depressed, apathetic and disinterested in his family too, very unlike the man I knew.
He started getting into car accidents, breaking things in the house with Herculean strength and unable to sleep at night but almost for 1-2 hours at most.
He was a career Navy man and people at work started noticing things too, but with retirement just around the corner everyone just let him be. By this time we had three beautiful children, but a daddy who was changed.
“The cruelest disease known to man” – unknown physician
Yep, that’s what the medical world calls Huntington’s Disease. Catchy phrase huh? Well if you’ve never heard of it, I don’t blame you. It’s rare, it doesn’t get much attention and it’s the worst disease that you’ve never heard of before. So what is it exactly?
Well in the most simplest of terms you take Alzheimer’s Disease + ALS + Parkinson’s and you’ve got HD. Only, add into it that it is genetic, your children have a 50/50 chance of inheriting it, oh and it kills you. Basically, it causes nerve cells in the brain to die, taking away your personality, you ability to regulate your emotions, eat, sleep, walk, and talk. Oh, and although it is rare, it affects kids as young as age 2. Did I mention there is no treatment available?
Enter the continued tragedy……
Juvenile Huntington’s Disease – it affects the kids too
As if learning that my husband was dying wasn’t enough, merely 6 months after his diagnosis my youngest child starting having seizures at 3.5 years old. Next she started getting very clumsy, couldn’t write her name anymore, fell all the time and walked strangely.
By the end of one year time she started choking on her liquids and behavior had changed dramatically. I had no idea that Huntington’s Disease could affect very young children, but it can. After doing research, I pressed her multiple physicians to test her for the disease, and I was met with a tremendous amount of resistance.
After finding an amazing Doctor who was able to see the combination of symptoms, we were able to run the test. It came back positive for Juvenile Huntington’s Disease.
We are devastated. Children with JHD often live only 3-10 years after diagnosis. Now, if you think that means we have time with our precious daughter consider the fact that during that length of time, she will suffer uncontrolled seizures, painful dystonia, lose the ability to eat, walk, talk, lose memory, be unable to learn and be bedridden. The children suffer the greatest and there is no research, treatment or clinical trials for them.
Autism, and ADHD, and food allergies OH MY!
Yep, we’ve got more special needs! My son who is now 6.5 has had developmental challenges his entire life. First came life threatening food allergies in which he’s been hospitalized multiple times. Next came Autism Spectrum Disorder, ADHD, Auditory Processing disorder, 4q34.3 Chromosome deletion, anxiety disorder and speech difficulties.
We certainly have a busy household with 504 meetings, IEP evaluations, PT, OT and speech appointments for both of my two younger children.
“Don’t let making a living prevent you from making a life.” John Wooden
Ah yes, the point of this website! You are here because like me you’ve got tons of challenges! I don’t have the luxury of a working spouse to support our family of 5 through all of this. Unfortunately, he is one of my special people I love and take care of daily. Did I mention yet that I work full-time too? We also keep the kids involved in normal activities like softball for my oldest and soccer for my son and we’re starting ballet for strengthening for my youngest.
Life is busy and it breaks my heart to be away from them for one minute. I have a good job, people I love to work with but it’s long hours, and very stressful work in IT. I have flexibility, but I need more of it. As my husband and daughter decline they’ll need more and more assistance and my heart is in a tug-o-war.
I’ve tried many things in the past to earn an income ‘on my own terms’ and I tell ‘ya I’ve been scammed and just spent more money than I’ve made, or I’ve been involved in things that just won’t earn the type of money we need in our situation.
Earning an online income offers the flexibility needed to work on my own time, to keep my interest and still be there for my family. That is why having my own blog is so great. I get to help people like me, have the freedom and lifestyle they deserve while helping their families and making a living.
Starting a blog and running it can be very cumbersome to learn and time consuming. I needed something I could plug into right away. That is why I chose Wealthy Affiliate. You can get started completely free! This is not just a blog platform, but a community of like-minded people who want to help you succeed. Full step by step training is provided, 2 free websites and over 10,000 people in the community to help you. You have nothing to lose. Hop on over to Wealthy Affiliate and check it out.
Thanks again for stopping by and I hope to see you on the other side!
Have a special day!