A Matter of Perspective

One of the biggest challenges special needs parents face is trying to unravel the complex issues associated with our children. Sometimes it’s asking, “Why won’t he eat?” to “Why is she so anxious during social events?” Parents like my husband and I not only have to deal with issues such as these but we are also trying to understand everything associated with him medically. All these things intertwine like a complex web and pulling at any part of this web will no doubt effect something else.

For example, my one of my son’s diagnoses is epilepsy and when his seizures become poorly controlled, we have to decide the next step in management. Most of the time we choose to increase the dosage of his current medication before trying another medicine or approach. We also know his behavior is directly effected by how much medication he is taking as he has been known to have a low tolerance for anti-epileptics at high doses. This has made finding the right therapy for seizure control challenging. We want control but we also don’t want to see him overly aggressive and causing harm to himself or others.

A few years ago he started a new medication to treat his primary diagnosis, Tuberous Sclerosis Complex (TSC). The medication is normally used to treat cancer but it has been found to be a promising drug to treat TSC. A year after starting this medication, he was seizure free but he also stopped eating. Feeding issues were not new to him but giving up eating was and we became concerned. After asking adults on the same medication, speaking to his clinic and a nutritionist, we have a better understanding of how the medication may be effecting him and a plan to help him get the nutrition he needs, but we still don’t fully understand how to unravel this complex issue. He could be refusing to eat because of his autism, medication, or behavioral issues. We also realize that we could be partly to blame for his finicky eating habits.

These two examples are not the only ones I could list but they are the issues that have caused the most conflict in our lives. It is particularly difficult for us to pull our son apart from his problematic issues and fully understand how to manage them, so trying to explain it to others is almost impossible.

I know my husband and I are not the only parents who are exhausted by the questions and unwanted advice over subjects we are trying to understand ourselves. We started our son in early intervention at four months of age. I have worked with therapist for years discussing his different habits and behavioral issues. We have spoke to his team of doctors, nurses, psychiatrist, nutritionist, and many more to try to give us the best chance of helping him live the fullest life possible. After seven years, there are many questions that we still cannot answer. There are many questions that don’t have answers. I want to share a few insights to what it feels like for special needs parents when conflicts arise over our child’s issues.

1: Unwarranted parenting advice makes us feel like we haven’t done enough for our children.
Although we have spent years with professionals to try to help our child work through various problems, there is no magic fix. There will still be times when he will have a meltdown, inflict harm on himself or others, and many other things we’d rather not see. This does not grant anyone the right to offer advice when it isn’t needed. The truth is, we don’t like seeing our children struggle either. That’s why we have been working very hard to help our children. Don’t forget that they are often struggling in ways we don’t understand. If you haven’t been working just as hard at helping, then stop the unwarranted advice.

2: Dictating to us about what you think our child should or should not do causes unwanted stress.
We have been there. There is a party and all the kids are lined up, ready to play a game and someone says, “Everyone plays, even (insert our child’s name here)”. We have even been told we HAVE to sing The Happy Birthday song to our son even though it causes him anxiety and will set off a meltdown. We do want to help our child test his boundaries but we are also well aware of those boundaries. We certainly don’t appreciate someone else making assumptions about what our child can or will do. If we choose for him not to participate, we have a good reason and if that isn’t good enough, prepare to get what you have asked for, anxiety from our child or a stern “no” from us. Asking before assuming is always the best approach.

3: Pointing out our child’s flaws is very upsetting.
I don’t understand why others feel the need to point out our child’s issues, like we are blind to them. We are obviously aware of these things, it is OUR child. Instead, try acknowledging the good things our child is trying to do.

4: Fixing our child for us undermines our parenting.
Trying to “fix” things, especially without our consent is not welcome. If we don’t offer our child fruit at the dinner table, we don’t want anyone else to either. If our child hasn’t had a haircut for a while, there is probably a reason for it. Don’t try to save the day with these “fixes.” We are not neglecting our child when we choose not to do or offer things that others may feel he needs. Sensory issues are usually behind the anxiety he feels over getting a haircut or being offered a new food (with a new look or texture) so unless you are a expert on sensory or anxiety issues associated with autism, please stop. The best thing to do is ask, “How can I help?”

5:  Ignoring requests associated with our child will indeed causes friction in our relationships.
My late grandfather meant well when he would ask my son if his food was “good” every time my son sat at the table with him. My son’s response to the question was always the same, he’d scream and hit himself. This never stopped my grandfather, he’d keep asking. This caused us a lot of anxiety because even getting our son to the table was an accomplishment. Mealtime is usually the biggest cause of anxiety for our son. It takes a lot of effort to get him to sit at the table for a meal and getting him to eat is an even bigger deal. After all the work involved, it would be undone with the same question from my grandfather, “Is that good?” Ignoring the obvious friction the question caused made mealtime a problem for all of us.
Sometimes an innocent question or action could cause anxiety for our child, so we ask our requests regarding our child be respected. Don’t be the reason for additional stress.

The bottom line is this; we need the support of those around us. We understand it’s hard for those who love our child to feel helpless because they want to help. The truth is, we feel helpless too but we are doing our best despite the fact that we don’t have all the answers. We want to be trusted to know what is best for our children. When we all work together, we have the best chance at helping these wonderful children have a happy future.

*d*

What is Important to Me in the Coming Election

Dear Presidential Candidates,

I would like to be very candid with you about my life because I am a representation of many silent voters who are watching you carefully. I am an American who is living with chronic illness and I am also an American who has a special needs child. It may be rare to have both a debilitating disease and a child with one but here we are and I want share 6 points that are important to me. By the way, I have Rheumatoid Arthritis and my son has Tuberous Sclerosis Complex. Neither disease has a cure so our problems are life long, so we hope for long term solutions to the issues that are important to us.

So, how can my life be important for your champaign?

1: My son collects Social Security Disability Income.
Thus far, I do not. My disease has become more debilitating since my diagnosis and some day I may choose to apply for Social Security Income, but the difficult process is enough to make me steer clear of it for now. Everything I have learned and experienced about social security is difficult. I don’t have to go any farther than my phone to realize how broken our system has become. Don’t get me wrong, I appreciate this vital lifeline but we have developed a love/hate relationship with this program that was supposed to be designed to help children and families like mine.

2: We are directly effected by drug companies charging outrageous prices on medications.
My son was prescribed a medication for a type of catastrophic epilepsy called Infantile Spasms. We saw a huge increase in the price of this medication after FDA approval. He has since started a new specialty medication and because of the price, we are required by insurance to get preapproval every three months. This means I am a sick with worry every three months wondering if they will approve the only medication that has helped my son have an improved quality of life and seizure control. When has it been acceptable business practice to jeopardize lives to make money? The practice of specialty medications being distributed only by speciality pharmacies has also become an issue. The problems some families run into with these pharmacies is inexcusable. These problems range from allowing delay in medication shipment (even if it means the patient will run out of medication) and dropping a patient without proper notification (we have experienced both).

3: I refused medication to treat my own disease because I didn’t know if I could afford it in the future.
In January our high deductible insurance starts a new year and we still don’t know if we will be able to afford the out of pocket cost until our deductible is met. More private insurance companies are offering skyrocketing deductibles with H.S.A. accounts. They try to say we can thus control our own health care with an H.S.A. but this is false. In the end we are paying a premium, pushing money into an H.S.A. account, and we still don’t have nearly enough money to cover these huge deductibles.

4: My son and I have missed out on equipment, medication and therapy needed to help us live the best quality of life.
Everything comes with a price tag and if you have a disease, are disabled, or have been diagnosed with something like autism or sensory issues, expect a huge price tag. My son has needed protective headgear and a bed enclosure for his epilepsy and we needed help paying for these steeply priced products. He have lived without many items that would certainly make life easier for both of us because paying the price for these items would be nearly impossible, even with assistance.

5: Getting help paying for the variety of different needs is complicated.
Life is already hard with these difficulties and so many people have to navigate the paperwork and hoops to try to get what is needed and/or prescribed. How to get help should be clear and require minimal paperwork.

6: Families are choosing between health and cost.
No one asks to be diagnosed with something life altering. No one asks to live a difficult life made harder by the system that seems to work against people like me and families like mine. The government needs to decide if it actually wants to help or just talk about it. Cutting funding for critical needs programs is a low practice that needs to be stopped. In the end, you aren’t messing with dollars, you are messing with lives.

We are supposed to be living in the greatest county but many Americans are without insurance or reasonable insurance plans to pay for their medication and health care. It is a tragedy when drug companies can set their own prices and have no regard to the lives effected when the medication patients need is out of reach. If you don’t believe it, go to the local hospital and ask questions instead of taking pictures. I guarantee parents still have to leave the hospital empty handed and without what they need to take care of themselves or a sick child. The life of the sick should never carry a price tag. How sad. It’s time to consider what life is like for those who need the most help.

*d*