No point in beating around the bush about it. Today was lousy. As I said in my blog yesterday it's finals week for my kids. The kids have 3 finals a day and are home by 12:30 each day. They are given many hours to study and prepare for their tests.
Rachel has refused to study. For any final. She doesn't see studying as homework so in her mind she has no homework. In our house you get no screens until your homework is complete. A small back story.... Rachel hasn't had screens in 2 weeks due to missing homework. With teens (and even later elementary and MS kids) you have to find their collateral. Like a time-out works for younger kids, the loss of their favorite privilege is a teens' collateral. That will look different in many kids, but in teens it usually surrounds socializing, and phone usage. Neither of which Rachel has any great interest in. That leaves screens. Her laptop and her phone. She watches videos, and creates computer animation clips, and digital paintings. This is her escape and we know how important that is for her, especially after a long day at school and during stressful times like finals (though I really don't think she grasps the importance of finals). But It's also the only leverage we have over her to keep her motivated, moving forward and completing her work for the day.
So today after school within 20mins of being home our first of a long night of battles ensues over her studying or she has no screens. She will argue, and debate her point. We disengage, making our expectation clear. She wants to fight. We stay disengaged. She storms off. She returns treating us very kind, and loving. And then follows it with the request for her screens. We stick to our guns. You can guess what happens next. This back and forth battle lasts for nearly 2 hours. Kirk and I tag teaming handling her so as to give the other a break. Rachel flinging nasty remarks of not wanting to live with us anymore and how unfair we are. I was completely okay with her moving out. Right then. Good luck kid. We survived the evening. She did not study and she did not get her screens. We'll see how that art final goes tomorrow. Sometimes you have to let your kids fail for them to succeed. It was an ugly night and I'm glad she's in bed now.
It would be easier if this were an isolated incident. Unfortunately it's not. This usually happens on average 2-3 times a week. Autism is a nasty disorder and makes my kid do and say some awful things. Those days really, really suck! Today was one of those days.
Hanna is also facing a significant flare in her Alopecia. She is actively, and rapidly losing her hair. It's slowly crushing me. And no doubt having an undeniable and indescribable impact on her. After an initial two years of a 6 month cycle of on again - off again hair loss and hair regrowth she is losing all of her beautiful, shoulder length hair that took more than two years to grow. In the last three weeks her initial patch at the crown on her head, that started as a dime sized circle is now about 4 inches in diameter. She has also lost all of her hair starting at the nape of her neck and moving up the back of her head towards her crown and wrapping around the front above her ears. The front of her hairline is receding too and will soon reach that bald spot at her crown. I caught a glimpse of her in her bathroom this morning after her shower. Her hair was wet. You can really see all the loss when it's wet. It took my breath away. I could see the progress of the loss in just a weeks time. I hate this for her. Absolutely hate it. I have previously described this as feeling like our NICU days. Sitting at the girls bedside willing them to live and breath but having zero control over if that will happen. We are powerless to this disorder. I can't imagine what it must feels like to be a sophomore in high school, where much of our identity is based on our appearance and be losing my hair. We are watching her closely for any signs of additional emotional stress. Hanna is a quiet kid, not letting much rattle her so it can make it hard to know what she's feeling. I try to watch and listen without being overbearing. Hanna's previous treatment to promote hair growth in the areas of hair loss has stopped working. We've been using it for more than three months with no growth. Last week at her dermatology appointment we evaluated our options, which are few, and Hanna settled on having steroid injections into her scalp in all the areas of hair loss. She had 50+ pin *** injections into her head. We will repeat every 6 weeks as needed. If we don't see any regrowth in the next 12 weeks it's likely not working. The odds are not in our favor but Hanna wanted to try it so that's what we do. She was incredibly brave, never flinched, and shed not one tear.
So yeah.... a pretty crappy day today. Thanks for giving me the space to get this out. I really needed to write.
So many big hugs to you. Know that we are here holding your hands through this when you want to vent, scream, kick, drink wine, etc. Continue to be there for both of your girls and take your own timeouts when you need them. You are an amazing mom!
I'm so sorry. All of this sucks. Many hugs to you.
When I grow up, I want to be like you. :) You don't know it, but you are doing an awesome job.
Hang in there. <3
Sorry for all of the crap. Finals week is almost over though and hopefully today is their last one. I know you're frustrated a bit. I know at times autism can really bring out the worst in them and us, but overall I'd say it's still awesome. Now, I'm not in the teenage years yet and my turn will come and then I'll really know. I was a high school teachers for 10 years, so I am familiar with the attitude. It's different when it's coming from your own kiddo and I get that. Your strength and energy with all of them is so inspiring. I hope that the latest derm appt will yield some positive results. All of your kiddos are amazing just like their Mom:)
Pack extra wine and have a wonderful holiday away,
*Hugs* I can't imagine finals week with middle school and high school kids! This year Abbey will take standardized tests for the first time and I'm really dreading it. I'm so sorry that Hannah is dealing with all of this, what a brave girl! Always here for you! You are such a an amazing mom, and I hope you get a moment to take care of you. Wishing you a Merry Christmas and a better day!
Love and Hugs
How I wish I could reach through the computer and give you and your girls hug! Jadon was without screen time( also our leverage with him) for 9 weeks due to grades, not turning in homework, and a round of other things. Its hard to stick to your guns. I can only imagine how hard those battles are. Hugs hugs hugs!
As for Hanna I'm sorry she is dealing with this flare up, I can only Imagine how hard it is on your heart to watch her struggle with this. Derek has Alopecia and every once in a while (usually when he is really stressed) he gets multiple quarter sized bald spot all over his hear. He is very self conscious about it and has had to get the steroid shot and after telling me about it I have to say you have one tough cookie on your hands. I hope this treatment will work her her and he hair starts to grow. Let her know that we are thinking about her and we think she is amazing!
I hope the holiday are smooth sailing for everyone in your home. Sending you a million hugs for the Crappy day and I hope you find today to be a better day for everyone!
Hugs to you. Crappy days are going to happen and admitting that they do is just fine. It really connects with the rest of us that no one is exempt from the terrible horrible no good days. Thankfully we have the good days that remind us the terrible days are worth fighting through. I am so sorry you are having a tough time with her and can't imagine what it is like. I am so glad you have a good support system with your husband as your teammate and together you two can stand strong. I will pray the injections help. Hugs to all of you!
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