The Thin Line

 Most of us with special needs children walk a thin line. We want to desperately show the world how beautiful our children are. We also have to get them the help they need. We have to advocate for them. I often will be on the side of positive statements about my children. I absolutely fundamentally think that without them I’d be a completely different person. A person whom I would not like very much. Can you a imagine someone that comes into your life and completely changes you? I know of two ways this happens. One you finally come face to face with God. Two you are given a special needs individual. Believe me this happens quite often. This is why I tend to be positive because I happen to have a positive view on my life. I happen to feel like I was given a blessing. 

  My children struggle especially during this time. We have had such a hard time this year. I could write an entire book of what went wrong in 2020. It wasn’t necessary the normal thing that everyone else was dealing with. You see because our family is not normal. We spend the first half of the year struggling with medical problems and hospital stays. Then the rest of the world caught up with us. 2020 happened for everyone else. We already started the year that shall not be named before it even came to pass. Right after we were locked up in the hospital we had to be locked up in the house. Leah began her mental decline. We were unable to do the distance learning. There was no provision for children like mine. My oldest can’t do the video teaching. She is scared of FaceTime, always has been. Zoom was out of question. Leah has always had issues focusing in school anyway. It took an army to maintain her during a day. Here we are trying to educate. Impossible. I’m still to this day struggling to figure out how? We have therapies that I take them to. Some are on video, most are in person now. We have 8 in total. How? Leah is barely functioning. You want to know what the real deal is? I just need their routine back. They need to have in person teaching. I want them to learn math, science, reading, spelling english. All the things that a person needs to know. They can learn these things. They need help. I can’t get it. I’m going to try but I’m exhausted. Emotionally and physically exhausted. The work it will take to get them in person. 

Inclusion, diversity words that are used a lot recently. Visions of what those mean come to you I imagine. They are different for me. I include the special needs community. We don’t include them. Alas, they are set aside. It will be okay they can wait. No, actually they cannot. They are desperate. We are distracted. We are squabbling over what? Special needs community can’t access things. Can you? Do you have access to a job? Do you have access to vote? Some in our special needs community can’t do that. Did you know? Can you independently go out of your house without some one else? Are you allowed to participate in an activity without having to fill out a ridiculous amount of paperwork? How about a diploma? Access to college? I can go on all day. You my friend are included, have access to freedom. Take advantage of it. Do me a favor? Right now thousands in the special needs community don’t have access. I fight everyday. Every single day I don’t lose focus. Can you maybe think of us in your inclusion? In the diversity we hold very dear. My children are worth every single bit of effort. I would know. It’s not because I’m their mother. It’s because in them I see the very key to humanity. I fight because I don’t take that lightly. I would gladly lay my life down for it. For those that asked the question which I find very appalling. In any case many special needs parents get asked.  If you knew would you have aborted? I think you have my answer.