It’s a comfort to know that there is someone in this world who is paid (by me) to listen to me when I can’t make my way through what’s going on in my head and my heart. And the bonus is that he is either a fantastic actor, or he truly cares about me and my family – especially Izzy. After Izzy refused to allow Jasmon back into her life last week, as more of a mentor than a therapist, I tried my absolute best to understand and be ok with that. I tried to listen to her and see the situation from her point of view. My biggest mistake happened when I made this “amazing” plan for Izzy…I talked to Jasmon, to Todd, to Angela, to Jackson to Mom and Dad and to Brad about it…and each of these adults, in turn, celebrated that plan. The one person I didn’t talk to about it was the one person it effected the most…Izzy.

Izzy loved Jasmon in the 5 months they were therapist/client. She laughed and shared and listened and learned with Jasmon. But when Jasmon left, the black and white mind of my girl said “I accept that I’m done with her and I won’t have her in my life again.” She moved forward thinking she would never interact with Jasmon again. When I tried to get her to meet Jasmon for dinner a few weeks ago, she kindly but firmly told me she didn’t want to do that, it made her anxious and uncomfortable. I didn’t understand, but I honored her words. When we pulled her from the center, we told her that she was done with ABA, that she was ready to move on. And she listened and heard us say those words and she took them to heart. She had made it, she was done. No more ABA, no more ABA therapy. No more Jane. No more therapists who didn’t listen when she tried to advocate for herself. So when I told her last week that Jasmon was coming to hang with her…the shit hit the fan. She was angry, disappointed, angry, and did I mention angry? She called me a liar and a fraud. She used the words I had told her on the day we pulled her out of ABA and she made a very compelling argument that she didn’t want or need Jasmon. She needed the chance to show us that she could and would do her work (school and home) independently. And when it was time, she needed the opportunity to show us that she’s ready to go back to school.

So Brad and I started our session there tonight. And before I knew it, we were far beyond that situation and were instead knee deep in my fears as an autism mom. And my heaps and loads of Mom Guilt that were further beating me up. Mom Guilt is something I’m really good at, I think most moms are. And that part of me tends to just keep punishing me when I already feel inundated with so many thoughts: Did I do the right thing, do others think I caved to my manipulative daughter (honest truth there – she manipulates me like a pro’ however I am better at identifying it and calling her out on it), will Izzy be ready for school in the Fall, will she find friends when she gets there in the Fall, will they be the right group of kids who will understand her and help her grow in positive ways, will she use the strategies she has learned or will she fall to pieces when things don’t go the way she wants or expects, will the teachers and staff listen to her when she advocates die herself. Brad validated each of my fears, and even let me delve further into that fear and take it 10 years down the road to “is she happy, safe, working, still in a positive relationship with me, is she surrounded by people who build her up and help her make good decisions, does she live independently, does she have someone to love her and care for her. And then hopefully decades down the road, will she be ok without me and Todd on this Earth.” These are true and valid fears for my girl…even when she’s only 13 yrs old…and they are thoughts that sometimes keep me up at night. Brad cannot solve those fears, but he can validate them, and he can tell me that we will walk each of those paths together if/when we need to.

I told him that what I want more than anything as an autism mom right now is another autism mom who has been down the road we are currently traveling. Someone I can trust. Someone I can ask questions to, bounce ideas off of, listen to their experiences and learn from them. Someone who understands the highs and lows of having an autistic child. I thought I had that in someone but she turned out to disillusion and disappoint. I am not the person who will join a FB group and look for this person, and I’m not the person who would go to a parent meeting looking for that mentor-type person. I will have to find them another way, but Brad and I can brainstorm that and work on it. I actually have a wonderful patient, who recently came back into my life after almost 3 years who knows our story and who openly shares the journey she’s been on with her own autism daughter. She makes me comfortable sharing the highs and lows of Izzy and she has always told me to call if I need someone to talk to. Maybe she is my person.

Brad reminded me tonight that even though she doesn’t, or can’t tell me in the words and actions that I crave (hugs), that Izzy loves me and trusts me more than anyone in her life. And he reminded me, as we could hear her upstairs singing, that she really is a happy girl. He made me realize that I have spent 13 years learning to “speak her language” and can speak it nearly as well as she can…although there is a large percentage of time that I don’t speak it because while I’ve learned to speak her language, it’s not my native language. And even though my mom guilt tells me that I messed up and I should have done better, I should have known the words to say, it’s ok to not always speak her language….and I know that next time my mom guilt, or my fears creep into the forefront of my mind, he’ll be there to remind me again and again…God gave her to me because He knew I would be able to speak her language when so many can’t and that I have the strength and determination to keep her from straying too far from her path.

A week ago tonight we were status quo. ABA, work, school, new puppy lov, enjoying nice weather and getting ready for spring cleaning. Izzy had her 1/2 birthday Saturday and we celebrated with dinner at BJ’s Brewhouse (one of her favs). Sunday we had a kind of explosive day-attitudes and annoyance between the three of us, but by evening Todd and Izzy were happily making fun of me as I cried over Dr Pol (an amazing veterinarian show on Hulu).

And then came Monday.

But a little background first. I haven’t been all that thrilled with our ABA therapists and experiences since about early March. Izzy seemed to be sliding backward some, it seemed she wasn’t getting much beneficial therapy at the center and she was getting angry pretty easily at home again. She told me she was alone quite a bit of the time at the center, but she said it was because her program was based on self maintenance and so she needed to be alone. I said something to Angela. Angela said something to the therapists. Shortly thereafter, Angela stepped down as the Clinical Director at the center. She would stay on as a consultant and continue to be in charge of Izzys program.

March 31 the tic she had developed became really frequent and a bit scary. Angela was about to go on spring break, but told the therapists she wanted them in the room with Izzy and the tic documented. Despite being told that someone should always be with her, she was still left alone at times while having a motor tic that frequently ended with her hitting herself in the head, not to mention the the director of Izzys program had told them to stay with her.

So back to Monday.

When Angela returned to the center after spring break, well, she called me to let me know things were not good and she quit. My first thought was “oh shit” but I think I said “well, good for you” because I firmly believe that if your job isn’t what you need it to be and people are directly defying you, then you need to move on. But “oh shit” because Angela was who I trusted there with Izzy. Angela was who knew Izzy and loved her. Angela was why I hadn’t pulled Izzy earlier. Angela is what we need going forward. So I asked her “Ok, what should we do about Izzy?” And without hesitation she said “I’d pull her.”

This is when I would normally talk to my work friends (which I did because they are right there and they help me so much) and then I’d make the decision all by myself. But with Brad’s voice in my mind, I instead called Todd to tell him and get his opinion—we are a parenting team.

And much to my surprise Todd didn’t say “whatever you want to do I’ll support you.” He said “well, I trust Angela 100% and so I think we need to pull her.” Wow. Me too.

I called one more person in our ABA village before we pulled the plug. I called Jasmon. Jasmon is Izzys previous ABA therapist. And she is amazing and when we had to change therapists in February, Jasmon then quit her position at the center. But she told us on her last day that she will always be there for Iz. So I called Jasmon. I told her what was happening and she said “I agree, you need to pull Izzy.” And then she did the most amazing thing possible. She answered my concern with it being 4 months until school started in the Fall and I didn’t want her to revert on all of her progress with “I will volunteer to spend a day or two each week with Izzy. Keep her on track and prepared to start school in person in the Fall.” I told her I couldn’t pay her, she told me I didn’t hear her say the word volunteer. And through my tears I said “I can never thank you enough.”

So with that our decision was made. I had to tell Izzy, but couldn’t call her, and I wasn’t ready to tell the owner, so I texted Izzy. I told her via text that it was her last day at the clinic and when she came home she needed to bring all her stuff with her. And also, she couldn’t say anything to anyone for awhile because I hadn’t told anyone yet. And ya know what? She did it with only a little bit of anxiety. That, was the most amazing thing to see! I changed her whole world in the blink of an eye….and she didn’t panic.

So the rest of the week she’s been home doing homework and chores. She has taken meds, eaten dinner with us and spent her evenings downstairs with us. It’s been delightful. She has talked about things that upset her at the center, things she enjoyed and things she learned. We don’t regret her time there… quite the opposite. She learned so much and grew so much. And she now handles her life, her frustrations, herself in more productive ways. And we met Angela and Jasmon, who both would do anything needed to help us.

Today was her annual IEP case conference. We did it with Noblesville West because we don’t yet know where she will land in August and so we move forward as if she will return to noblesville. Angela was there with me as an advocate for Izzy and it went well. Our biggest concern is behaviors re-emerging, and with a daily behavior chart from her TOR, we can monitor that. Angela will help along the way as we need it. We will be in good hands with her in our village.

Izzy didn’t quite finish her program or get the “graduation” celebration with her therapists. But what she got is far more important. She got parents who put her first, who did what was best for her and who love and support her with all their hearts.

So this Friday night we are home with a girl who has taken two walks around the neighborhood today. Who is going to hang out with her Bio-sister and see her Biological Mom on Sunday and who constantly amazes me with her strength and resilience.