Major Life Challenges Blog Series

We are taking a closer look at some of the big issues we all can face in our lifetime. Each topic will be featured as a blog series.

The Day I Became a Special Needs Parent

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The Day I Became a Special Needs Parent Not in my wildest dreams did I ever think I would have a special needs child. My son was born healthy, weighing in at 6 pounds 1 ounce. Of course, he went through his toddler years with the typical colds and viruses kids this age seem to catch like wildfire. It wasn’t until he turned seven that we had experienced anything more than normal childhood illnesses.

He went through the entire summer of 2010 on antibiotics for strep throat. His pediatrician finally recommended we see an Ear Nose & Throat specialist. The ENT immediately advised we have his much enlarged tonsils removed along with his adenoids, so we did. He made it through the surgery with flying colors and was back to his rambunctious, energetic self in two days.

Winter passed and spring sprung to find my usually “wild” child opting to stay indoors and lie on the couch instead of playing outdoors with his friends.

Football season started the last week of May and he was ready to play, or so we thought…

How do you know?

As my boyfriend and I watched my son’s first two hour football practice the day before, we looked on as he downed 2 24 oz Gatorades and an entire jug of water.  I assumed it was because this was an unusually warm day in May, and well football is a very physical sport.

Then we watched as he ran to the bathroom three times during practice! Later that evening we arrived home and again he’s in the bathroom!  As my son showered my boyfriend turns to me and says, “I don’t want to alarm you but, I think something is wrong with him.”

I looked at him like he was nuts. This is a child who is involved in sports year round and has the energy of well, the energizer bunny! I dismissed his concern and we went to bed. The next morning my boyfriend brings it up again, “I think you should take him to the doctor.”

I respond with, “Ok, I’ll make an appointment after school lets out in two weeks.” He says, “No, make it for today.” Frustrated and annoyed with his persistence I called and was able to get an appointment later that morning.

Hearing the news…

As we sat in the waiting room my son says to me, “Mom, why are we here, I’m not sick?”

I replied, “I know buddy, but Mommy wants to make sure your engine is running smoothly.” He laughs and soon we are called back. I review the prior evenings practice with the nurse and she suggests she take a urine sample.

We wait in the tiny room, laughing and talking about something funny his friend said at recess earlier that morning, when we here from the hallway, “Oh my God!”

Yikes, that doesn’t sound good. The nurse re-enters our tiny room and asks to take a finger stick. I say, ok but what is going on?”

She replies, “I just want to be sure.” Sure of what, I think but agree to the stick. She looks at me and says the doctor will be in shortly. My heart races and in the pit of my stomach, I know something is wrong.

The doctor returns and reviews the so called “symptoms” I had relayed to the nurse earlier. He reviews the test results of the urine test and the finger stick. Then the words came, “Your son has diabetes.”

What? I must be dreaming or this isn’t’ happening, it can’t be. My healthy little boy is diabetic? “We don’t even have any family history of diabetes” I say.

The doctor explains that while diabetes is not hereditary it is genetic; meaning his father and I happened to throw a gene that matched up to cause his condition.

My head was spinning, and my son looked at me, and said, “What’s wrong with me mommy?”

I didn’t know the first thing about diabetes or what this meant for him and our family. I would soon find out…

Survival

My son and I spent the next day learning the “survival skills” for taking care of his newly diagnosed diabetes.

The next few weeks are a blur; six blood sugar tests a day, four insulin shots and constant carb-counting were our life. It soon sunk in that this was forever, my baby, my healthy little boy had to grow up to fast. 

If you have a special needs child I know you feel my pain. Join me over the next few weeks as I share my experience and the overwhelming medical expenses that went along with it.

If you have a special needs child I would love to connect. I never thought this would happen to our family, and I struggle everyday with guilt; this is my fault, I don’t want to do this, why us? Any advice or support is welcome!

Read More Posts from our Medical Debt Series:

The Cost of Mental Health

Proper Planning Can Prevent Financial Disaster

Suzanne Cramer

Suzanne is a certified credit counselor and a Social Media Specialist for CareOne Debt Relief Services. Suzanne writes for Divorce, Debt and Finances and Major Life Challenges. Follow Suzanne on Twitter @ADivorcedMom where she shares her insights as a single-divorced mom with tips and tricks to keep your finances in check. 

 

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  • I just want to let this mother know that I will be praying for her and her son. I can't help her in the way of special needs children, but I can pray. I work with special needs children right now, and I know she is probably very drained right now. Best of luck!

  • @skinemgirl Thank you so much for your support! Yes, everyday is a challenge but we are learning to manage his diabetes and getting better at it everyday. The biggest challenges come when he is away from me and I worry. Thanks again it means alot. :)

  • I promise this is doable. There are many diabetic supply companies that can help with a program called Patient Assistance Program. We were able to get 6 months of free Lantis pens. Supplies can be obtained generically, Many doctors can get supplies or samples for you. Don't be afraid to ask. My son is playing football, in a band and juggling school. We hired a sitter wtih diabetes who has good management skills to be a mentor to him. John runs him to all the practices.  If Big John can do it ( my son idolizes him) then my boy can.  The school nurse is a world of help. Camp for Diabetics is free or low cost. They really push camp the first year so kids aren't feeling so alone.  It helps to see 100 goofy 10 year olds all giving themselves shots and testing too. It stinks and you never quit worrying or wishing it was different but it gets to be doable. Hang in there. Prayers.

  • United health care has a program to help with copays. It is some sort of assistance that cuts the copays. Blue Cross and others might have it too. If you qualify Children's Health Insurance Program or CHIP is very low cost and can help tremendously. They had educators for my son and for me. It was free. I used that the first 2 years. Don't be afraid to ask for help. The local diabetes chapter has stuff too.  Sometimes people have leftover supplies.  We found the diabetes walk and the University Medical school program to be of great use. Be upfront about finances. Trust me, they've seen it all. They're super creative. Walmart has cheap supplies.

  • I have a rare genetic defect called spastic paraparesis.  My mom and dad were the same as you: no family history, so why does she have this?  The doctor explained to me and my mom (my dad had passed away by then due to cancer) that is was progressive and that I would eventually have to use a wheelchair for the rest of my life.  My mom and I spent days looking up information on this defect, as well as problems that is causes (neurogenic bladder, spasticity, mobility problems, digestive problems, etc.).  We discovered many websites and Facebook had support groups for people with disabilities.  I wanted to let you know that CCS Medical has diabetes supplies and will deliver them to your home.  I go through them for my urinary catheters, ostomy supplies and wound care supplies.  They are wonderful!  

    My mom wanted me to tell you to just take it one day at a time.  Things will be worse before they get better, but once you get into a pattern and schedule, it is smooth sailing to raise a special needs child.  Mom used to worry abotut me constantly when I was out and about in my wheelchair that I would fall out of my chair and get hurt, or that my feeding tube might fall out and I couldn't get anyone to help me, but I just had to tell her that I was okay and to not worry, I was only a cell phone call away.

  • @Kit in Texas Thank you so much for the advice and support! I never realized how many children were afflicted with Type 1 Diabetes untill my son was diagnosed. It truly helps to have the advice and support of others who "have been there" as no one really knows the daily struggles like someone who has been through or is going through this. I am just started to get involved with our local JDRF chapter and have found em to be hugely helpful.

  • @prettykitty123 Your story brought me to tears...hearing from a child that has a special need reminds me how strong and brave my son has been through all of this. Your mom is right I do worry but it gets easier each day and it helps to hear from other moms that "it will be ok". Tell her thank you for me :)

    I have never heard of your condition before and I will be sure to read up on it. You sound like you have amazing strength, bravery, and a positive attitude--I wish you all the best and I will be thinking of you and your family.

  • CoachSuzanne,

    Thanks for the reply.  I have had to endure a lot of medical issues in a short period of time, due to the progression of this genetic defect that I have.  I had to have a mitrofanoff urinary diversion in 2006.  This is where they take your appendix (if you still have it, otherwise, they use large intestine), and attach one end to your bladder and the other end to your belly button.  This way, you can use urinary catheters through your belly button to empty your bladder.  This surgery was great, because it made it easier to cath while sitting in my wheelchair and dramatically reduced kidney reflux.  In 2008, I had 3 seperate surgeries: a total coelctomy where they removed all of my large intestine due to half of it not functioning and was starting to tear. I had to have emergency surgery due to a peri-rectal abcess the size of a grapefruit (which is deadly in 25% of the cases following intestine surgery).  I had to have a chest port put in for IV's and blood draws, because the majority of the veins in my arms and wrists were too scarred up to use. I also have to have an ileostomy revision, because my stoma kept sinking back into me.  In 2009, I had to have the rest of my rectum and anus removed to complete my total colectomy, and I had a GJ feeding tube put in due to gastroparesis (paralysis of the stomach).  I can still eat solids, but most of the nutrients have to be through formula through my feeding tube (as do my medicines and extra fluids to decrease rapid dehydration).

    Despite all of this, I am still active and happy.  I think that kids and even young adults who have to go through a lot in a short period of time mature faster than others.  They are more responsible, because they have to take on more responsibility to make sure they stay healthy.  

    Your son is braver than you think.  Have a nice day!

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