So, I think that this period of reprieve has continued long enough that I can finally comfortably post about it. I mean, I’d love to have a few days of positive news – and immediately fill you all in – but the truth is that so many times things shift immediately downward and I’d wish I hadn’t said things were better.
But right now, this time —- it’s the first time in EVER that I genuinely feel that things are going tremendously well. I’m still dubious. You cannot have years of downward spiral, and not squint your eyes a little bit at this infant-6-weeks of happiness. But regardless about my hesitancy, it is here, and is staying.
Family and friends have asked me, “SO, what is it? What has suddenly made things better?” and I am sure that it’s a combination of several elements:
First, we had a medication shift that appears to actually be positive. I’ll go ahead and share, but I believe that the Topamax has been the game changer – along with the side-kick of Cymbalta. We hadn’t tried Cymbalta in the past because is in the red on her Genesight test. That doesn’t mean it’s bad for her or she shouldn’t take it, it’s more that the Genesight test confirmed that she likely metabolizes duloxetine very rapidly, meaning that she may require higher doses than average. So far, we’re doing just fine on regular doses.
Second, our school district (HUGE shout-out to Fountain-Fort Carson School District 8 in Colorado Springs and SPED District Administration E.Z. for their stunning understanding, support, and dedication to success for ALL students) approved a 1:1 teacher and a 1:1 bus aide for Emma. This means that there is always a staff member at school that is there with her, ready to immediately pick up on warning signs and diffuse a situation. They were pretty much already assisting 1:1 before this, which was understandably leaving her classroom short-staffed. But they would occasionally have to help with other student issues during class and transitions, leaving Emma wide-open for negative events during her most susceptible times. Her bus rides have also been measurably better with the 1:1 bus aide. She has someone there to help her navigate things that are just SO hard for her! She is smart and very verbal, but her lack of executive functioning skills leave her out in the cold. Literally. Sometimes if she’s very aggravated or emotionally exhausted, she will be freezing and just cry or throw a sudden fit about it instead of simply putting her coat on. The bus aide helps her navigate that environment, and it’s awesome.
Third, I resigned from my teaching position as a special education teacher. I obtained a job working remotely (from home) as an executive assistant through BELAY Solutions. They are great! I’m considered an independent contractor, so technically, I’m self-employed. Oh well! This has benefited Emma immensely. First, my entire morning from waking her up to getting her on the bus is 100% dedicated only to her, and keeping things happy, ritualized, and as least-annoying as possible (that is least-annoying for HER, NOT for me!) No more me getting ready for work, getting work stuff completed, trying to rush and fit it all in so early in the morning. It’s all about Emma. And more importantly? If Emma is up through the night or has a really bad night’s sleep? I don’t even wake her up for the bus. I do this amazing thing called LETTING HER GET SOME SLEEP – so that she can try to function a bit more through the day! It’s totally cool. NO MORE GUILT. I’d feel so bad, because if I let her sleep in and drove her to school, I was late for work and letting everyone else down there – including my students. If I woke her up and managed to get on the bus, I’d feel guilty for subjecting her school’s staff to her unavoidable horrible day, and I’d feel bad for Emma – because she doesn’t want to “be bad”. It sucked. Now, it’s no more! The only guilt I feel is that the bus aide might feel like she was unnecessary, but I just can’t feel too bad because… well, because. I need a break from guilt.
Fourth, Emma has found a measure of positive self-esteem from our charity we have started, Emma’s Cards. She desperately needs something to feel good about herself with. She is painfully aware that when she is out of control of herself, that she is “bad” and hurts other people. She has such a beautiful, generous, caring heart, and her self image is destroyed on a daily basis by her actions and her physical self-image. Emma’s cards has been filling her need for philanthropy and do-gooding. Which I can really relate to! So, we’ve started the big push to get Emma’s Cards off the ground. You can connect to it on FaceBook here, too. Don’t be offended if I dedicate an entire post to Emma’s Cards in another month or so.
Now, to kind of let you know what life has been like here. She has stopped aggressing at me 100%. She tells me all day long how much she loves me, that I’m the best mom in the entire world, and she tries REALLY hard to control her emotions. When she gets upset, as long as I handle it perfectly (and I do mean PERFECTLY) she will calm down and come out of it within minutes, 80% of the time. Within a minute or two, she is tearfully apologizing to me, “Mom! I’m SOOO SORRY! Please forgive me!” which is a huge change. She has been getting on the bus well, and dealing with disappointment about 50% better than before. She has been sweet, loving, and caring. She has been handling my husband’s commanding and harsh tone of voice very well, almost without reaction most of the time. I’m even able to get her to brush her teeth, bus her own plate from the table, and occasionally actually refill her own water!
She is still scared at bedtime, but we have a routine of our special Emma-Mom time before bed, and I just try to stick to it. I would say her sleep is approximately 50% better than before, too. Picking is horrible, but self-injury has halted. I haven’t heard her complain or cry about Roblox being gone for weeks.
Now. Life is NOT peaches and cream, I assure you. And things are still very touchy. I receive an incident report for a restraint or a seclusion on a daily basis (not exaggerating!) The difference though is that they are able to get her de-escalated within minutes, the elopements have ceased, and repeat high-intensity incidents aren’t happening all throughout a day. In essence, she’s really starting to be able to self-calm and get a better grip after an incident occurs.
On a personal note and to kind of bring a level of awareness to the mother-situation, you could also say that in the last 2 months: I’ve resigned from my career to bring in about 25% of my prior income, have SSDI starting a recollection of a $13,000 overpayment, had to put my 14-year old most amazing dog companion Arrow to sleep, and I went through a hysterectomy-plus repair surgery. It’s been a freakishly stressful year and an insane 2 months.
Thankfully I have a dedicated, loving collection of family and friends that always find ways to brighten my day, along with a daughter that (usually) fills my heart with love and joy. She can be so precious!
*Quick note: if you’d like, you can also connect to this blog through Vision of Autism on Facebook.