From the outside we look like a normal urban family. A Dad who works long hours, a Mom who works odd jobs to help the family, and two adorable, active, redhead boys.
My oldest son was diagnosed with ADHD at four years old. We immediately tried alternative treatments for his ADHD not wanting to put a four-year old on stimulant medications. We had him in behavior modification therapy and occupational therapy for sensory issues. He also had some medical issues so most weeks we were paying $80 to $120 in just co-pays for therapy on top of $900 a month for insurance for the family. Then Ryan started having seizures. He needed to go on epilepsy meds and the rescue med for a seizure lasting more than five minutes was over $350, the three-month co-pay for his meds was over $100. After psychoeducational testing he was diagnosed with learning disabilities. The school wanted him to have a Therapeutic Support Person with him. To qualify for TSS services you have to be on state medical insurance. Since starting the evaluations to qualify for TSS services the doctors think my son, who has always had a ton of sensory issues, may actually have an Autism Spectrum Disorder diagnosis. We will be having an evaluation for that in April.
My younger son was a baby that frequently threw up even though he was breast-fed. He was always a thin baby. When he was a year old we gave him yogurt for the first time. Within minutes the yogurt was all over him and the tray of the highchair. Where the yogurt touched his skin, he was blistering. As he became a toddler he lost enough weight that he was in the negative 40th percentile for weight. Over time with trial and error we have discovered he is allergic to milk, egg, peanut, beef, and pork and he has been on a strict avoidance diet. His allergies have gotten worse over time and he suffers anaphylaxis. He needs to have an Epi Pen in his vicinity at all times. He has four Epi pens at school and four at home. Each pair had a $150 co-pay. With all the allergies my boy had frequent ear infections. He has had ear tube surgery twice and now also is suffering with asthma.
My children’s needs had us THOUSANDS of dollars in medical debt. I went to the local Children’s Hospital to apply for medical assistance on the advice from a social worker friend. I live in a state that provides kids who have disabilities Medical Assistance based on need, not their parents income. I remember the day I got the medical cards for my kids in the mail. I cried huge tears. Part of it was relief that the medical bills were not going to continue piling up, that I no longer had to plan our specialists visits around what we could afford but around my kid’s needs, and partially I cried because they have serious issues that they both qualified for medical assistance.
It’s been a year. We are still fighting for TSS services for my older son and we have been to the allergist a few times in the last months. I had to renew the medical assistance but I am so glad it is there for them so I can concentrate on helping my kids, and not the bills filling my mailbox.
About the guest blogger:
Jo-Ann Rogan was the lead singer of the infamous punk band from the 90’s, Thorazine, she married the guitarist from her band. She now spends time as a dive bartender in Philadelphia and is a freelance jack of all trades. She blogs at Punky Mama about her wild redhead special needs sons. She tweets @punkymama