Those Unseen Things

Sometimes there are good days. Sometimes there are days that can go up and down. Sometimes there are bad days.

It’s hard when she has self-regulating issues. I provide a means to get her back on track, but if she doesn’t or refuse, we have to step away from a situation. Being in the car has been a dreadful experience. She doesn’t stay buckled. Thank goodness for childproof locks! She throws whatever is within reach. She will undress and throw items while I am driving. Having something to keep her occupied like a leap pad can go either way. Either she’s completely engrossed and has a break down when the battery dies, or she flips out and throws the leappad.

Worst of all is grocery shopping. I make multiple attempts to bring her to the bathroom and keep it consistent. That is the one thing that she will often fake me out for. She’ll use the excuse that she needs to go. We leave our carriage, go into the restroom. She asks me for more time. She doesn’t go or only goes a tiny bit. We clean up, dress, wash hands, etc. Quite often I find my cart of food is gone as someone assumes I left it and decided to put all of the groceries back which causes further frustration. We go to the bathroom first when we arrive before we do our shopping and sometimes in the middle and at the end if we are with other people so we can take turns watching the carts. It’s quite different when we’re alone and the bathroom breaks are only the beginning.

When I am by myself I take her straight to the car if she acts out when shopping. She calms down. We go back in and start shopping again as our cart has been put back. She freaks out. I leave the cart and groceries and take her back to the car. Rinse and repeat until I am asked by store personnel to please stop leaving groceries in my cart and taking off unless I actually intend to buy something. They would request that I leave the store and maybe come back when I can better handle my child or better yet, when she is not with me. How do you explain “I’m training my daughter who has autism and you’re not helping”? And even when I have said it, I get the looks of disbelief. She doesn’t look autistic, because clearly autism can be easily distinguished by the way a person looks.

They don’t understand the meltdowns. They don’t understand why or when I melt down and I yell, because it’s been happening for days or I am beyond frustrated myself for not being able to continue to remain calm and collected 24/7. They don’t see that I take the time to apologize to my daughter for my own behavior if I lose my cool, because I want her to know that I’m not perfect and I am responsible for my actions. I still struggle just like her. I talk to her and tell her why I was wrong and why it’s important that we talk. Even if we need time to cool down, it’s good for us to come together and find mutual ground. I know it’s not easy for her and I don’t expect or want to force her to be normal.

People don’t see how long I go being incredibly patient and calm where most others would have flew off the handle with their own children who are considered normal developers. They also don’t see that I feel like crap about it. That I feel like somehow I am supposed to do everything a million times better because she is autistic. That I am supposed to have the patience of a saint. I don’t want that kind of pedestal.

I just want to see my daughter smile. I want her to know that I love her and I support her. I want to go down the slide with her because she wants me to join in the fun. I want her to understand the importance of things like shopping, driving, cleaning up after yourself, and taking responsibility for your own actions… Because I hope she has the ability to live her life and be self-sufficient, or at the very least, be able to contend with the likes of society. If she can’t, that’s fine too. But I want to do all that I can as her mother, to give her every opportunity to practice, and try to become comfortable with these things.

It was never the diagnosis that freaked me out or scared me. It was wondering about the world’s acceptance of who she is as a person, and who she will grow to be, and needing to know that I did all that I could to help her survive the brash uncertainty that lies outside the walls of our home. That is what causes me to lose my cool. That is why I shed my tears. I just don’t know at this point.

I personally struggled with the acceptance of my peers, and I still struggle with accepting myself. I’m trying to work on that. It’s never too late. It just takes time and it’s never easy, but I want to be an example in her life and show her that there are always struggles and imperfections. I want her to know that while I don’t always feel like I’m a perfect mom, I can at least tell with all of my being that I know I have the perfect daughter.

 

ABA versus IEP

My daughter had an amendment adding an extended school year to her IEP. She really needs consistency and has a difficult time getting back into class after weekends and vacations. It makes it difficult for the school to meet success with her IEP goal even after scaling back the goals to better suit my daughter.
It’s hard to find a rhythm that suits her needs because they do change frequently. At home, we can more easily adapt. Academically, she learns things quick. If boredom sets in, she’s done. It’s her self regulation, primarily frustration, and her social skills that end up lacking. 

At home she loses out on much of the social skills with her peers. She doesn’t have siblings, but a cousin who is about a year older inconsistently connects. She prefers adult attention, which isn’t much different from my own upbringing as an only child. 

Things have been consistent as can be at home especially with ABA. We have charted so much progress with everything that we work on in the home setting. One of the biggest things has been the desire to show affection and the need to receive it. She used to push us away, say no, run off, etc. I grew up with a mother who was very attached and cuddly, so it was strange to not have that response in my own child. I think giving her some space allowed her time to understand the social aspects better.

At school we heard a lot about bad days, especially on the bus. She often gets sent to another room when she freaks out and they can’t calm her down. She has a lovie that was helping at school, but she was throwing it on the bus. Granted, the rule for the bus is to keep her items up front. So I want to say that is on them, but it also doesn’t give her the opportunity to learn to keep track of her own items in a suitable manner.

We may lose ABA if she gets assigned afternoon hours for the extended school year. They need to hire and train someone new and because the school hours would change come fall again, they would probably wait and start up with the fall schedule.

As a family we had to investigate the situation as this is new to all of us. We have to ask her teacher to request morning hours. We won’t know what hours she will get until about a week before the extended school year starts. We decided that if we get morning hours, we will keep both ESY and ABA. If we get afternoon hours, we will drop the extended school year and keep ABA.

ABA is consistent 5 days a week. Regular school is 150 minutes 4 days a week. ESY will go four weeks only for 150 minutes 3 days a week, then back to the 4 day schedule for regular school with afternoon hours come fall.

We realize it may continue to hinder her school progress, but it’s looking like she won’t hit her goals for this year. We have already mastered a number of items with ABA and continue to maintain and add more.

Weight a Minute?

My jawbone will no longer stay charged. The company is useless for repairs even though it’s covered, no one has responded in months. The only thing I can do now is return the item to walmart and get my money back. As an emotional eater, I really miss this tool. It helped me understand my body. I used it in conjunction with myfitnesspal to get under 200lbs. This week I hit 199.8.

I am on my third month of hormones and I wasn’t really gaining too much (just the bloating was insane) and my weight would return to normal. I realized that as long as I hit 10,000-12,000 steps a day, I could include some comfort foods as long as I didn’t binge and go crazy. Not knowing my steps makes it quite difficult. I am standing on my feet, but I know I’m not walking as much as I was. I haven’t had the time for walking or for food…. It’s pretty bad when you are rushing home to stuff your face and go to bed only to get up and be driving and running errands every single day. I’m pretty burnt out.

With so much emotional and physical stress, it’s a tool that I really need to help me stay accountable because I have a hard time tracking without real-time data. I’m honestly at a point of being so burnt out that I just don’t care if I’m shoving my face with food before bed and going to sleep because I didn’t have time to eat all day. Before I could eat take out, watch my steps, and be fine. The guilt is creeping back in though and it’s frustrating. I think it’s time to invest in a Fitbit at this point.

I recognize that there is all of this stuff going on though and what I need to do to help myself put things back in order. There are going to be times that I just don’t have time, so I need to be wise and find other ways to cope. Like writing about it here…

My laptop takes forever to load but I finally ordered a case for my computer parts so I can put my new desktop together! I honestly start out intending to write, since I had issues on my phone, but it takes so long that I’m already sleeping by the time it loads up. I’m sure I need to clean out space on it too which I will do once I have the new one set up.

So I need to get back to meal planning so that I can take breakfast and lunch with me. It would be nice to have dinner ready to go when I get home as well. I just want good things for so many people in my life right now. I just can’t keep it up with it all and really need to step back and work on me. It’s hard to remind myself that sometimes, but it’s true. I am an important and deserving person in my life that needs time as well!