- SPD (Sensory Processing Disorder)
- ADD (Attention Deficit Disorder)
- ADHD (Attention Deficit Hyper-Activity Disorder)
- PANDAS (Pediatric Neuropsychiatric Disorder Associated with Strep)
- Trisomy 21 (Down Syndrome)
- OCD (Obsessive Compulsive Disorder)
- Mood Adjustment Disorder
- Complete AV Canal Heart Defect
- Immune Deficiency
- Adrenal Insufficiency
- Thermoregulation Issue
- Hypoglycemia (Low-blood sugar)
All of the above are labels. Labels to describe an illness, a syndrome, a body or brain dysfunction. So many of which I still don’t completely understand but ALL of which Hannah has been labeled with during her lifetime and all which still apply. Two of the above “labels” are very recent and in all honesty have caused me much sadness. Many of these issues require surgery to “fix” or “repair;” some which might require more surgery somewhere down the line. Others, are treated with “band aids” (medications). Some with diet and some…..well, there is no fixing it, repairing it or really treating it. Labels…..we love to put labels on things. “Oh so and so yells out the same repetitive phrases like that because he has Autism” or “Oh she has OCD and she can’t leave the house without checking all the doors and windows to make sure they are locked.” Labels give us at least some reasoning behind why some people do the things they do; but for those suffering from the “labels” life is so very difficult.
As a parent of a child who has been saddled her whole life with “labels” it gives me an answer for why Hannah does the things she does or says the things she says….almost like at least I have an excuse to give someone on why Hannah behaves or acts a certain way that is “not normal.” But, can I share my heart here? May I lay it open briefly for you to see? I grieve for my daughter every.single.day. The things she does that she doesn’t even understand because her brain is wired differently than most. The repetitive speech, the hand flapping, the hair twirling, the head slapping, the hand washing, the “fixing everything perfectly,” the seizures, the emotions…..etc…..things she doesn’t understand and yet her brain controls it all. I watch and listen to her 24/7 and my heart aches. Not only because so much of it I don’t understand and I know she doesn’t; but the fact that others don’t understand either. There is no explaining away her “being so different” and “acting a certain way” to everyone all the time…..some times we just have to let people stare and shake their heads like she really has control over it or we could do something to make it stop. I am not just talking “behavior” here. Trust me, we discipline Hannah. She has never and will never go without consequences for the actions she has control over but there is so much that she doesn’t have control over and as a mom it is so hard to watch her go through so much and then have to endure people staring and wanting reasons on why she “acts or thinks” the way she does. I only have labels to give…..no explanations and so much I still don’t even understand myself.
Not too long ago on Facebook people were sharing a video of a child having a horrific tantrum. Now first, why ANY parent would put a child on YouTube or FB of their child acting out is beyond me (I digress). But, what had me so puzzled and saddened were the people sharing that video and making comments like “if that were my kid I would beat his butt” or “my child would never act like that and get away with it.” Granted, I understand the “reasoning” behind it and the way most people think…..if you have never dealt with your child doing things like that, you would reason it to say that the child lacks discipline and what you would do if it was your child. But, oh, let me share something…..until you are the parent of a child who has little to no control and gets sent into sensory overload or has a meltdown due to something out of their control; you have no clue what you will do until you are in that situation! Who knows what set hat kid in the video off? Could it have been just a temper tantrum and that he lacks discipline? Absolutely! But, could the child have a label? Autism? PANDAS? SPD? PTSD? Mood Adjustment Disorder? Anxiety? The list can go on and on. Labels……it gives us a reason to explain away certain behaviors and personality issues but for the child and the family living with those labels it is a 24/7, 365 day a year battle; one that is filled with questions, grief and sadness.
I have actually been in a situation with Hannah where all people could do is stare. I am sure they were thinking….”wow that kid needs an ass whopping!” Or, “that mom certainly has no control!” People just stood, stared and didn’t even try to help. If just one of those people had looked at me through compassionate eyes, instead of judgmental ones I could have “explained” and maybe even received some help. On the flip side…..I remember one time in St. Pete, alone with Hannah. We were crossing the street and all of a sudden, Hannah lost her mind and sat down in the middle of an intersection (I don’t know what set her off, except that she was in a PANDAS flare). She was fighting me and I couldn’t get her up to save my life. Cars were honking, I was embarrassed and panicked and a guy on his bicycle, threw his bike down, came out into the intersection and asked if he could help. I said “yes” and he picked Hannah up and carried her across the street for me. I was in tears and tried to explain Hannah to him. His word to me were “I understand, until you have lived it, you don’t understand and I have, God bless you.” I thanked him and he left. THAT…..is exactly what parents need when you see something happening. Compassion, kindness and understanding. It doesn’t mean go to everyone you see having an issue with their kid and ask if you can help; but as human beings could we just show compassion in our eyes, face and attitude instead of that judgmental “how dare their kid act like that” look?
One thing I have learned through this hell of a journey with Hannah is that we all have issues, things, events and struggles in our life that NOBODY knows about. You don’t walk in my shoes and I don’t walk in yours, but if we would act like kind human beings and just show compassion for others wouldn’t this world be a better place? I know kids can be unruly, disrespectful, rude, pains-in-the-butt…..but SOME (not all) of those kids have labels…..some of those kids, like my Hannah, cannot help it and some of those parents are living a hell on earth and are doing everything they can to help their child so one day they won’t be a burden to society. Some of us choose to or have to stay locked up in our homes due to our child’s labels…….maybe some people are glad about that and wish more of us stayed “locked up.” I know some people are grateful they don’t have to be around Hannah……and personally we are grateful we don’t have to be around people who don’t show compassion.
Am I angry today…..yes….. (is it obvious)? I promise there are people out there, like me, who miss living life but we are doing EVERYTHING in our power to take care of our children; even though we appear we are failing…..we aren’t! We are just doing everything we can to survive! Compassion, kindness, understanding……can’t WE ALL use some of that in our life?
Until next time…………