We had a rough week, but I’m sure we are not the only ones. When your child has an invisible disability you often become the center of attention at times you would rather forget.
My daughter is 8 years old and has High Functioning Autism. She looks normal. I mean no physical indications that she might have special needs. But when you look closely, you will notice the baby talk, the twirling and jumping up and down and the tantrums. If you are parent of a special needs child you know how it feels, to be judged every time your child does something not typical. You get advice from people who don’t know what they are talking about; you get the looks and whispers, and you often wonder if someone is going to call the police or Department of Child Safety. One of these days it has to happen, right? I had a name and the cause of my daughter’s behavior for about 2 years now. When you start noticing that your child is “different,” you also notice the constant judgement and looks people give you. At the beginning, it will consume you. It’s a feeling of being alienated, judged and not invited to places other parents do. It hurts and it throws you into a whirlpool of emotions you didn’t know you had. After a while you will become desensitized and realize that in your world all those judgements are not a big deals. Sure you will still notice, but you will focus on the fact that your child didn’t break anything this time, or did not run away from you when they had the chance or was able to calm down in a reasonable time. It will not come easy, but it will come …..and antidepressants and anxiety medications (for you) help. If you are taking them and have a difficult child, you know what I’m talking about.
We are all being taught that when you child is misbehaving, you need to analyze the function of the behavior and produce the appropriate response. This means you HAVE TO stay calm! Believe me, if you get emotional it will make your child worse. That’s where the meds come in. People don’t talk about this, but many parents of special needs children are medicated. How else would they be able to have that patience and stay calm while their child is literally “beating the s**t out of them.” Yes, I’m talking from personal experience and I know I’m not the only one.
On Wednesday, my daughter ran away from school. A whole story by itself. On Thursday, she was trying very hard to “keep it together,” especially after all day of In School Suspension. She did not have homework that day, and she was not allowed to watch TV or YouTube videos as consequence for not being safe at school. My husband and I kept her busy the best we could until bed time. That’s when we realized she was so wound up and we were out of Melatonin. Even she realized she would not be able to calm down without her “sleeping gummies.” My husband stayed home with our 4 year old son and I took my daughter with me to Fry’s. I debated about leaving her at home, but two “crazy” kids would be too much for my husband who worked hard all day and didn’t have much patience at that point. She wanted to go with me. I was not surprised, she could not watch TV or Youtube – her 2 most preferred activities so going to Fry’s was exciting. I should not have taken her. In the car, I set the rules. “We are going in, get sleeping gummies and we are not getting anything else for you. If you see something you want, we will NOT get it, understand?” I got an irritated “Yes, mommy, I know!”
We get inside, get the gummies. Buy one get one free, perfect – but they were out of the big bottles so we had to settle for the small one. I debated going to a different Fry’s to see if they ha the big bottles in stock because that would be so much cheaper. Of course I could not do that, because that’s change of routine and would cause a tantrum for sure. That’s the other thing parents of special needs kids do, constantly analyzing every situation and predicting possible effects on your child. It’s exhausting! So 2 small bottles of Melatonin it is. “Oh Christmas stuff, can we please go look at the Christmas stuff?” “I promise I will not get anything.” At that point, I made the ultimate mistake of saying “ok.” We get exhausted too, and that one time, we don’t analyze the situation and don’t predict every possibility, that’s when things will get downhill fast.
She saw a nutcracker. She didn’t want it for herself, but for Ella, because Ella gave her something a week ago and she needs to get something for Ella. Very reasonable, however we have been getting “things for Ella” or “things for the teacher” almost every day. Part of Autism is obsessiveness. When we get a list of “teacher likes” at the beginning of the school year and my daughter reads that her teacher likes Disney, every time we see something Disney – we “have to” get it for her teacher. It’s not a choice, it’s an obsession and if told “no” will cause a major meltdown.
I said “no” to the Nutcracker and as expected “all hell broke loose.” For the next 10-15 minutes I was thrown things at and hit. How bad can an 8 year old hit, right? It’s Monday and my cheekbones are still sore. I hate to restrain my child, but when she is hurting me, herself or others, I have no choice. So there she is yelling and screaming, crying hysterically as I’m holding her down to away being hit. She is trying to get out of the restraint and knocks me down to the ground, so we are not laying down on the floor in the middle of Fry’s. Her, crying hysterically and yelling to let her go, me trying to not break my hold or get distracted by the people watching. A lady walks up to me to see if my daughter needs help, I try to politely tell her that we just need to wait it out until she calms down, but I get distracted, loosen up the hold and BAM. She’s got a mean right hook. At that point the lady realizes it’s not me hurting my child but my child hurting me. She asks if I need help and I repeat what I said before.
Again, analyzing the situation and the only logical thing is to wait it out until she calms down and then hopefully be able to leave. It took us a good hour. The great thing is, we got Melatonin, didn’t get the Nutcracker and no one called the police.
That was just one day in our lives. The sad thing is that people are not aware what is happening because your child looks normal and is either considered a “spoiled brat,” or you are considered an “abusive parent.” It’s neither one! But can you blame them? How are they supposed to know if no one talks about it! And what do we do? Most of us try to avoid the situation all together and not take our kids shopping and not take them to public places that we know will cause a meltdown. We are hiding away the disability, isolating our child and ourselves because it’s easier. But think about this: If people never see the ugly side of an invisible disability, how are they supposed to learn to accept it. How many of us preach acceptance, but don’t show the world your “real child.” I was thinking about carrying those cards that say: “My child has Autism…..” to give people an explanation, however when I’m on the floor trying to keep her contained and safe, I don’t have time to hand someone a card.
Please if you read this blog, comment and tell us your story. I’m sure you have one!
Touchpoints are a new lifestyle technology backed by neuroscience to help relieve stress, symptoms of PTSD, ADHD and many others.
I ordered the Touchpoints Basic - which has 3 speeds - slow/blue, medium/green and fast/purple. I wanted to try both models, Basic and Original, however Original is on back order so Basic it is for now.
The kit comes with 2 Touchpoints, charging cable and clips. You will have to add on the wristbands if you want to. Wristbands come in a pack of 2 for $20 and sizes small or large.
I ordered the small wristbands, since I have the same size wrists as my daughter. Each set of wristbands comes with a connector. The bands have a tiny pin which clicks into the connector and then you can slide the wristband onto the Touchpoint. Considering my fine motor challenges, it took me forever to get the pin to click into the connector. My husband got them all in within a minute. Due to my struggle wit the pins, I chose to keep the connectors on - as pictured in top right. If you chose to use the clips, you can simply slide the wristbands off and connect the clip. Super easy.
To activate you simply press the button on the Touchpoint, press more times for different settings. The light will indicate which setting you are on. So far my daughter and I have used the slow and medium settings. We yet have to explore the fast setting. Pictured bellow is my daughter doing her homework with the Touchpoints clipped on her sleeves.
TouchPoints™ use Bi-Lateral Alternating Stimulation Tactile (BLAST) stimulation to give the user a gentle vibration that affects the brain and alters the body's fight, flight or freeze response.
I can definitely say, it helps my daughter to focus and get her homework done faster. She likes the vibrations. I have become "addicted" to the Touchpoints and been wearing them daily a work. As an adult with ADHD and Asperger's, it helps me focus and see things more clearly. Normally, I have to stem or fidget in order to focus. With Touchpoints, my body is completely calm - the vibrations give me all the "input" I need.
There are few things that need improvement. If you have sensitive hearing (can hear co-workers phone vibrating 3 cubicles away from you) then the Touchpoints are a bit loud. I thought it would bother me, but other's told me they cannot hear the vibrations and I got used to it where it doesn't not bother me anymore.
The other problem is the battery life. The Touchpoints are designed to be worn for shorter periods of time - not all day. If you are using them only for specific activities - like my daughter's homework, it will not be a problem. However, if you plan on using them most of the day - like me at work, the battery will run out in about 3-4 hours and will need to be recharged.
All in all, I LOVE the Touchpoints and can't wait to try them out on my daughter during different situations. We have yet to try the setting that would calm her down when she gets angry. In order to do that I have to do some coaching on keeping the Touchpoints on her body and activating them when getting upset.
I'm looking forward to see what other benefits they have for me, however I have to say the improved focus and hyperactivity is a HUGE one.
I will keep you updated on any new developments, please let me know if you have any questions or comments.