Earlier this month Emmaus was diagnosed with autism. Tuberous sclerosis is the leading genetic cause of autism, so we have known from the start autism was a possibility. However, Emmaus has always been pretty social so I haven't really thought much about it. In the last six months we have become more concerned about some of her behaviors. She has become much more stressed in social situations and when we try to take her out of her regular routine. She also has developed a lot of repetitive behaviors. Luckily she has remained an excellent snuggler and truly loves being with people, she just often has a hard time knowing how to engage with them- especially with peers.
We booked an appointment with our local children's hospital to have her evaluated and without a hesitation they said she has autism.
I knew the diagnosis was coming, but was kind of surprised by how hard I took it. When your child has a incurable genetic disease there is a lot of rolling with the punches. As parents it is our job to protect our children, to "make things all better", to educate them, love them, teach them to become independent. And with TS so many things I cannot make better, I cannot heal her. I cannot stop the seizures from coming, or the tumors from growing. I cannot figure out what is wrong in the middle of the night because she can't tell me why she is crying. However- I felt we were being intentional about her education, her therapies. And then when you find out actually this whole time we haven't been speaking her education language. So not only does she have a developmental delay, but we have been educating her in the wrong language? Yeah. That didn't sit well with this pregnant mama.
The recommended therapy for Emmaus is "Intensive ABA therapy". It is a therapy that has been proven to improve the social, functional and educational abilities of those with Autism. It is their language so to speak.
The great news is that there has been a huge push for insurances to cover ABA therapy. It is even government mandated in many instances. So I felt hopeful we would easily be able to get her the therapy she needs.
However- the insurance we have does not have to comply with this rule for a few reasons. I kinda feel bad for the sweet lady who had to tell me that on the phone when I called to check our benefits- cause I lost it. Full out 30+ week pregnant woman sobs.
We have done a lot of research on therapies. And have found a wonderful in-home therapy group. This group will address her speech and fine motor needs in an ABA approach and work with her (And us) to teach appropriate social skills, to educate her in a way to improve her independence, language, ect.
This therapy isn't cheap. The recommendation for Emmaus is a minimum of 10 hours per week. 2hrs per day. We are hoping to start with 6 hours per week through the summer plus a 3 hour per week social skills play group. Which will run about $2,500 per month for June and July. Then when school starts back up in August we will just do the in home hours. Starting in October when I go back to work after baby- the hope is that I can receive benefits through my work for our family since they cover this therapy.
I am not even stressed about the finances of all of this. 2000-2500/month? It's literally laughable. Because honestly- we are so far away from being able to afford this each month.
We have prayed a good amount about this whole things and feel peace in moving forward. We will be applying for several grants to help lower the cost. And literally the day after we decided to move forward a friend called with TWO $500 checks towards Emmaus' therapy. If you are reading this and feel compelled to host some sort of therapy fundraiser for miss Emmaus let me know. We would welcome that. We are open to ideas and options to get this funded through September.
Dan and I are both really glad we can work hard and provide for our family. We have had some very generous help along our journey so far, don't get me wrong. But mostly we can work hard, provide for our girls even with the medical expenses and we do okay! But this- we cannot do alone. If timing for all of this was different, maybe I could increase work ours now, switch insurances now, ect. But this just can't happen till after I am done with maternity leave. So I am excited to see God work. To see funds come in, therapies happening and growth for Emmaus!
Wednesday, May 13, 2015
I will hold myself to a standard of grace. Not perfection.
Then I battled with my guilt in feeling that way. I had this morning to myself! A sitter came so I could go to a work meeting. And for those 3.5 hours I wasn't responsible for anyone but myself.
Except- that's just not true.
In that time I called the pharmacy- to have them call NORD (who pays for one of Emmaus' meds cause its hella expensive) so I could pick up her med this afternoon.
Then I called our insurance company to see if ABA therapy is something they cover. (Looking into options for Emmaus)
Then I got to the meeting.
Then after the meeting I went to costco, the bank, and called Emmaus' current therapy place to see if they offer ABA and to see if they had any other in-home resources for us.
And somehow I think that was "time to myself?"
I feel confident in my ability to mother. I have always wanted to be a mother. I have always had an innate desire to love- and love well. To encourage and speak life and truth and confidence into my children. I feel truly honored to get to mother three girls.
However- I often lack the confidence to mother Emmaus. To provide what she needs, while not making our whole life about her. I struggle with her routine, her appointments, and the administrative duties that come with all her special considerations.
Yesterday I took Emmaus to her autism evaluation. I knew she likely would be diagnosed- clearly she isn't socially appropriate, yet I was surprised when the diagnosis stung. I was surprised how much it tasted like vinegar as the words level two autism were spoken over my girl.
I was unprepared for some of the observations of the doctors. Things I was feeling pretty good about, were explained away in two seconds. It honestly felt like starting over. Like hearing about TS for the first time.
I don't generally feel much guilt about things- especially in mothering. But yesterday thinking about the sacrifices my other girls will have to make on account of Emmaus. I felt guilty. Was it fair for us to subject them to this road?
Of course I come back to the reality- that Emmaus is a blessing, and they truly have the reward of a sister like her. She will always love them, she will teach them, and find simple joy in them. She will give them perspective and love.
I so wish we could wake up and she could be whole. That I could hear her sweet voice, and know her thoughts. That she could tell me how she sees the world, what she did at school, what she wants for dinner.
And though I might have more "me time", less administrative work and definitely less appointments and therapies, I also wouldn't have this simply beautiful girl slowing me down, teaching me about the reality of life.
So for now I will just work on having grace for myself. In not feeling guilty for running away from home to aimlessly wander hobby lobby and target by myself at night. In allowing myself to be sad, cause gosh darn it I am freaking almost 30 weeks pregnant and the Dr just confirmed Emmaus has Autism. I will work on letting the dishes pile up in the sink (Dan is laughing- cause this comes naturally and doesn't need any work) and holding the girls when they want to be held. When Emmaus comes and finds me in the kitchen, grabs my hand to come to the couch so she can sit in my lap and watch her show, I will join her. Because for now- we need each other. And to have the grace to sit and be still and unproductive must be learned.