The silent battle of special needs and medical care

Most people are aware of the constant battle for advocacy in the educational system when it comes to special needs. But there is another looming battle that special needs families face on a daily basis-medical care. Medical discrimination is real. It is something we personally deal with on a regular basis with Luke. I have many personal stories I could tell about Luke. But it is not just us. Hear me: Individuals with autism and/or other special needs are much more likely to experience medical discrimination.

I was reminded of this again this morning thanks to FB Memories. Two years ago,  we went to Duke to see pediatric ophthalmology for Luke's newly developed lazy eye. We waited 3 HOURS before we even got placed in an exam room. When the doctor finally did come in, she spent 5 MINUTES with us. I explained that the onset of his lazy eye had occurred a few months earlier and I would like to know how to treat it. Did he need to wear a patch? What would be the course of action? She said that nothing needed to be done. I told her that I would like it treated-Luke didn't look this way before.  I left furious. Although she apologized for the long wait, that doesn't make up for the 90 minute drive there, more than 3 hour wait, 5 minute visit with no resolution, and a 90 minute drive back home. If I had brought in a verbal, pretty little girl, do you think she would have come up with a treatment plan for her? I do. I believe that because my son had special needs and was non-verbal, he wasn't provided adequate medical care.

Or what about the time I took Luke to the Emergency Department because I was sure he had C. diff. Clostridioides difficile (also known as C. diff) is a bacterium that causes diarrhea and colitis (an inflammation of the colon). The resident told me it was just a virus and I was just an overly worried mother. It took me another week before he was diagnosed and received treatment because I had to go through the process of getting  a stool test ordered by the pediatrician and all the steps of having sample evaluated. Not only am I also a medical professional, but I am a mother who knows my son. Respect the input of caretakers.

Luke's medical symptoms often get dismissed as "it's just autism". This is just WRONG. Because he cannot verbalize or pinpoint what is wrong, most of the time he is not even given an adequate exam. Unfortunately, there is a  lack of the standard of care for individuals with autism. Did you know that individuals with autism spectrum disorders have a higher comorbidity burden than the general pediatric population, including higher rates of seizures, psychiatric illness, and gastrointestinal disorder? .And yet, these comorbidities are not often addressed. THIS NEEDS TO CHANGE.

Similar to the school system, when a child is medically complex and doesn't fit in one or two boxes, providers often do not know what to do with them. Parents are left exasperated. And the children's needs are not adequately cared for. Luke has been passed over by medical programs at several medical institutions in multiple states because of this very bias. Luke has multiple diagnoses: deafness, autism, Usher Syndrome, PANDAS, as well as mitochondrial, metabolic, and immune dysfunction. And he is nonverbal. He is not less of a human. He deserves appropriate medical care. And we are not alone. I could share additional personal stories as well as story after story of others who experience this bias.  THIS NEEDS TO CHANGE. 

The purpose of this post is to educate others- those who know nothing of the battle we fight, and those parents who are in the midst of this very battle themselves. Awareness is the first step to addressing a problem. We must all do our part to give these families a voice to receive appropriate medical care for their loved ones.

** I am thankful to share that Luke is currently under the primary care of a wonderful, attentive pediatrician and neurologist who are addressing his medical needs.**

Be BOLD,
Jo Anna

Would you commit to pray for Luke for 7 days?

Luke’s IVIG infusions are scheduled for this coming Friday and Saturday.

Would you commit to pray for Luke for 7 days?

Sun 11/10: For PEACE in our home

Mon 11/11: For Luke’s anxiety and fear to be minimal during the infusions

Tues 11/12: For Luke to be compliant and do what is asked of him during infusions and for him to not rip IV out.

Wed 11/13: For Luke to show no aggression or violence

Thur 11/14: For an important IEP meeting for Luke at school and telephone appointment with Luke’s neurologist.

Friday 11/15: For the 2 nurses who will be here administrating the medication.

Sat 11/16: For minimal side effects and for the infusions to be successful in treating Luke’s condition.

To read more about Luke's story or to share or donate, click here Luke's GoFundMe

What I want you to know

I have so much I want to say, but I’m too tired.

I’m no different than you reading this.

I want what you want.

For my kids to be included, to have fun, to enjoy life.

Luke was giddy with excitement. Costumes were on.

We headed over to the neighborhood Halloween dinner. And...Luke had a major meltdown there. 

It wasn’t because of lack of parenting or discipline. Do you know how hard it is to not know what is triggering your child? Was it the crowd, was it sensory, was it because we practiced trick or treating but not about the party and dinner? It's exhausting to remember to prepare for every little detail when going out in public. 

No one was unkind, but it is so very embarrassing. Imagine if you were "that family". Let that sink in. Your son is acting up. You don't know why. He's so strong. You need to remove him from the situation now. The three of us struggled to get him back to the house. The rampage then continued for some time inside our walls.

Luke’s heartfelt cries literally broke my heart. Hot tears rolled down his face. I cried sitting there on his bed trying to comfort him. Eventually he calmed down. I got him something to eat. We then went over the visual schedule for trick or treating AGAIN. Sarah and I took him out to about 15 houses and he did wonderfully. He was so very happy that he could participate and not miss out on the fun!

Life isn’t fair. I certainly know that. However, Luke has been through so much more than most could ever imagine. Removal from his birth family at 3 months old, profoundly deaf, adopted at 28 months old, bilateral cochlear implant surgery, the hard work of therapy- learning to listen and understand as well as all the occupational therapy, the diagnosis of autism and then ABA therapy. With resilience and courage, Luke surpassed many goals. He still had much to overcome but he could self-regulate his sensory needs, he was doing fantastic in school and he could participate in social activities. His loving, happy personality was always present.

Then life turned upside down for all of us in March 2018 with the overnight onset of PANDAS. Infections. Viruses. Vocal and physical tics. Light and sound sensitivity. Urinary incontinence. Loss of handwriting. Change in personality. Regression in all areas. Violence and aggression. Not wanting to eat. This has been Luke's life and our life for the last 21 months. To say that life is hard is a vast understatement.

Medical care is a constant challenge and battle. Unfortunately, there is controversy over the validity of PANDAS in the medical world like there was about fibromyalgia 10-15 years ago. We are thankful to have a local pediatrician and neurologist who support us. We are STILL WAITING for labs to come in from The Mayo Clinic. Our pediatrician reached out to them yesterday because it appears some promised labs were cancelled and others were not run at all. 

School is another constant challenge. Can you imagine how exhausting it is to advocate and fight for our son with regards to issues at school? Upon our return from Mayo, we have had several school situations that have needed to be addressed. We are Luke's voice and it burns me up how our special kids get lost or mistreated along the way by the very ones who are responsible for educating them. I am sure I am disliked and talked about behind my back. But I don't care---Luke is my number one concern.

Lastly, and this may be controversial, but we never wanted or expected this Special Needs Family Life. In fact, we tried very hard to avoid it at all costs. It's not our thing. Sorry, but it's true. We don't love it. We don't want it. Most special needs families we  know would desire for their kids to be neurotypical and healthy. And why is that so wrong to say? If you don't live our lives, you have no room to judge.

Hear me out, I know people mean well. 

But please, don't let your only conversation with me be about the special needs coffee shop that recently opened-while I am trick or treating with my son. I already know about it. 

I just want to pretend for 30 minutes that we are a "normal" family, not a "special needs" family. 

Just say "Hi". Or "Luke looks like he's having a blast!" Something. Anything. As long as it doesn't draw attention to his special needs. And how we don't fit in. And how he misses out on so much.

Letting you see into our world is therapeutic for me and I hope educational for you.Thank you for standing beside us on this journey. We are excited and praying for successful outcomes with IVIG therapy. Luke will have his first two infusions on 11/15 and 11/16.

If you would like to read more about Luke's medical story or to donate or share, click here

Luke's GoFundMe

-The Crawford Family