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