Thursday, January 8, 2015
Day in My Life as a Special Needs Mom
Some days I just want to throw in the towel. I mean seriously... call up the school and say "Take them and have fun." I know many of us have those days. It's not like I am ever going to do it though. This week has been a challenge. Lots to do before our next trip, and Joe is on another trip. So everything is on my plate.
Living with special needs kids is different for everyone. Some days are what we call "normal" and without any incidents. Most people do not even know that my kids are special needs the first time they see them. Yesterday wasn't one of those days though. It was such a long day, and it was an all day sensory-meltdown-anxiety party.
My day started at 4 am. I had to get up, check email, run invoices/whitelists and get their school books packed. I buy 31 bags and keep them lined up when we have appointment days. I drop items in them as I think of what we need where we are going. I also had the medication bag packed and the snack bag ready.
Lydia's appointment was early and then we had an oil changed scheduled for the van. I also had 3 errands to run in Bowling Green after the oil change. I had the day planned out. I knew my time schedule.
So I got the kids up, some got their meds, and one got a quick shower. I was scrambling to get out the door. That is the thing with Autistic children, things are supposed to be on their timeline....not the reality that we live in. So I was stressed just getting in the van.
We had to leave at 6 am on a very cold morning to make sure we get there for her appointment on time. I knew I wasn't going to make changes, but we go for him to check if she has any side effects, etc. Well with it being a new year, there was a few new adjustments that are now made in each appointment. Each time we have to do a verbal questionnaire about behavior and things that parents see. It's quick, but was something new. Well Joey was in true form yesterday morning since it was so early. He kept talking over me as I was answering. That is one of Joey's Compulsion issues. He can't stop talking once he starts. It just keeps going and going. So with Lydia being a challenge, Caty whining she was tired and hungry, Brayden refusing to turn down the movie he was watching on his tablet and Joey's non-stop talking, our appointment ran over. Which created chaos since I had back-to-back appointments.
We left, grabbed them breakfast and headed to our next appointment. I called to let them know we were going to be about 30 minutes late (it was an oil change and tire check). We are about half way there when I hear a noise. Wasn't too concerned.....until the van started pulling and feeling wobbly. We only went about a mile after we heard the noise. I pulled over in the middle of the country...in a very frigid wind tunnel....only to discover a blown tire. Yep the same tire the dealership was checking for me at the appointment. At least the van didn't quite because wind chills were negative.
So I called AAA and had a horrible operator. She was nasty because I knew the highway I was on, but not the crossroad I was near. I told her it was too cold to walk the almost 1/2 mile to find the crossroad sign and we were in the middle of the country. I said that I had my 4 children with me and I WAS NOT leaving them in the van by themselves. They are special needs and cannot be left alone for any amount of time. She told me to hang up and call the sheriff's department. Seriously!!! They will tell me my location. So I put on gloves got out of the van and prayed hard that the kids would be ok while I walked down the road to find a road sign. Absolutely NO ONE stopped...nothing. But they were speeding down the road above the posted speed limit.
I get back in the van and call AAA again. So mad and trying not to yell at the different operator about the rude and nasty person I had talked to before. I did explain that the person put me in a terrible predicament and risked my safety because she didn't want to do her job. That got me an hour wait for a wrecker.
In the mean time, a state highway patrol and a Perrysburg police officer checked on me. But again, this is where special needs kids can really make or break you. The state highway patrolman pulls up behind my van while I am on the phone the 2nd time with AAA. Joey turns around in his seat and freaks out. We don't know why he does this. He had issues when he was in public school with a couple police officers, but they were always nice to him. (Yeah we were ice breakers in our district for autism...we were fortunate to deal with police being called for autistic meltdowns. And people wonder why we won't use public schools anymore.) Joey starts beating on my van windows like he was kidnapped. Yelling loudly. On top of the fact I was trying to give him his meds while on the phone. So I have a large amount of pill bottles sitting in my lap. I quickly threw them in my purse and rolled down my window as he walked up. I surely didn't need anymore issues. (They are all prescribed, but what a hassle having to be checked out.)
He was nice and made sure we had heat. I explained I was on the phone with AAA. Joey is still screaming "Officer...Officer...the lady from AAA was nasty to my mom. She had to walk to read the road sign." I laughed a little and said, "he's autistic and prone to drama." The officer laughed and told me to call the sheriff's department if I need anything else. And to not move my van any further off the road even if AAA told me too. He left then.
At this point, no one is screaming they have to go to the bathroom (just me...but I kept it to myself). I prayed again for a smooth time with minor hiccups. The kids kept playing their electronic toys they brought. Except for Lydia who asked her brother to pack her laptop and he forgot her mouse. With her, a mouse is essential for playing Minecraft. So she is have a kicking and screaming meltdown. Someone so tiny shouldn't be able to scream that loud. But she can. Finally got her distracted and doing something else. Then a Perrysburg officer stopped. Same conversation, except Joey said, "Hey...Hey....your friend already stopped." To which, the office raised his brows and said, "What? Who stopped?" So I explained that a State Highway patrolman had stopped about 20 minutes earlier and checked on us. Then told him that Joey doesn't understand the difference between patrol cars, he just knows what a police officer uniform should look like. He snickered and said, "Ok, if there's an emergency, please call the Perrysburg police department and we'll be right out."
More waiting...more waiting....and finally the tow truck driver calls me. He pulls up and I get out. I showed him where everything was and he said, "Well I can't change it here." I asked what he meant because the officer said to stay where I was. It was VERY COLD...FRIGID. So cold, I had to get back in the van. The kids had blankets over them because the tailgate was open and so was the side door. Then he looks at me and said, "if you were on your way to the dealership, I'll just take you there." I looked at his 2 seater tow truck and asked where we were supposed to be. He said, "Inside the van." I responded, "On the flat bed in the van??? Is that safe? Is that even legal?" He responded, "Yeah we'll be fine. And you guys will be too."
So I got back in the van and he hooked us up and drug the van on to the flat bed. This made the kids just freak out. It was better than visiting an amusement park. Caty is laughing hysterically. Brayden has the nervous look on his face as the van bounced and jerked around from the hydraulics. And off we went on a flat bed. Sounded odd to me. We get to the dealership and the ride off the truck was more exciting. Sounded like a roller coaster lift. More laughing....more anxiety. The man at the dealership that I worked with looked at me shocked when Brayden told him what happened.
More waiting...more waiting. I had brought their schoolwork that day since I planned the appointment for the van. The dealership has this little room with a door for kids. They can be a little loud without disrupting the sales floor then. So I worked with the kids on their work. More whining...I'm hungry...I'm thirsty....but I don't want the snacks you brought!!! Ugh....I seen the older couples sympathy smiles. I recognize those now. Yeah, those smiles that say "Poor you..."
And now I have a donut one the van and an appointment at the tire place because the tire was destroyed and we have a warranty with the tires. So we head home so I can hold the Live classes for Homeschool with Minecraft. Then head back to the tire place at 5 pm.
5 pm is kind of a nightmare time....we start dreading the late hours. We don't usually go anywhere in the evening unless we have too. It is awful. Major sensory, major anxiety, and tics happen in the evening. But I HAD to get this fixed. So an hour at the tire place to replace the tire....only warranty that has really worked for us. And then I had two errands I was supposed to do earlier to get done. This is where the story starts sliding downhill again.
A hobby store vs. our kids. I ran out of supplies for a project for the girls American Girl Club. Needed two things to finish it. I am glad the store was empty. Because the employees got a huge display of Brat child. Brayden was stressed and reached a point and he was literally running up and down the fabric aisles. Caty then started chasing him. Lydia is screaming my name, even though I was talking to an employee about what fabric I needed cut, just to show me a pattern. Then she melted down because I told her we were not going to do the pattern right then. I would get them later when I had time to try and sew the doll clothes. Poor Joey is starting to cover his ears and rock at all the others were doing and started having an anxiety attack. Yeah....I was barely holding it together. It was AWFUL!!!
I was trying to keep Caty distracted while we were waiting in Hobby Lobby....
We finally got out of there. But I had one more errand to run....Home Depot.
I needed two things....just two things. I knew exactly what I wanted. I threatened them all with the loss of electricity if they didn't follow the rules exactly and told them to stay with the cart. Home Depot is a sensory nightmare with lights and floor to ceiling displays. So much so that while I was looking for a plug for my mom, I found Brayden just staring at a rainbow light bulb. It wasn't as bad, until I turned my back while asking an employee where the water coolers were. That's when Lydia locked Caty inside a sliding door display....because she could.
Calgon couldn't even take me away from this!!!! To make it even worse, the employee thought I wanted a jug that holds water to carry around, even though I explained what I wanted. Thus making the trip last a lot longer. Finally we were able to find what we wanted, and got the two items. Then Brayden saw something he had to have. He was so excited and genuine smiles...I gave in. Then Joey saw something for Grandpa, and with the good news we got from Grandpa about his health, I let him get it.
But we got out of there, with minor incident. I got them dinner at McDonald's. I realized that pulling a trip through the driveway tonight was not going to be a punishment, because they honestly didn't understand that their loud behavior was not appropriate at those times. They were acting out from the stress of the day, being constantly forced into uncomfortable situations. We got home and about an hour or so later, Lydia was being kind and wanting to help me with cutting the fabric. It was crazy. I call it Dr. Jeckyl and Mr. Hyde syndrome. The boys even went to bed at a normal time.
Sometimes this is a fully normal day....minus the flat tire. When one is calm, another is upset. But when one is really upset, the whole bunch usually slides down quickly. I finally got to go to bed about 11:30 pm. But then I was up off and on until I got up again at 4 am. Joey was wandering the house in his sleep. Then he got up and said...."How did I get there?"
Yesterday was definitely not a day that I would consider their disorders a "blessing" as some people put it. It was a hard day without the extra anxiety and sensory issues.