I opened my devotional from Proverbs 31 today and was met with the story of Abraham, Sarah and Hagar. And guess what…this is exactly what we have been talking about! God used this devotional today to remind me what Brad keeps taking me to in my past sessions. God sees me in my hard. He sees me when I speak out loud the hard truth that I’ve buried deep within. He sees me as I struggle with Tommis faith and my baptismal promises for Tommi. He is with me as we discover Tommis truths and needs. He sees me when I think I can’t continue down the path we are walking. He sees me, He loves me. He tells me that He is with me and He may not save me from my pain but He is walking this path with me.

As Kara Tippets said in her amazing book The Hardest Peace (I cannot recommend Karas book enough!)…Suffering is not the absence of Gods goodness because He’s present in our pain.

Thank you, God, for the life you have given me. For the love and light places. For the hard and dark places. Because through it all, I am learning to listen, I am strengthening my faith and I am growing closer to You.

There are weeks where I feel no need to write; and then this week where I can’t stop writing. Writing this blog about Tommi and the life we live is therapy and a way to look back if/when a similar situation happens again down the road…and after I have a session with Brad, my mind and heart are usually so open that things just flow out. Brad and I met yesterday. Before we met, I felt this small sadness in my body – I couldn’t put my finger on it, but I told Tosha that something is there and I hoped that talking with Brad would bring it to the surface. Things have been good with Tommi, Todd and Jackson lately. We’ve had no major issues or disappointments or disagreements. Yet I could feel this sadness taking root. And 20 minutes into my session with Brad, out it came.

I don’t know exactly what happens when I’m in session with Brad that these deep seated fears/thoughts/feelings just come bubbling out. Maybe it’s his amazing therapeutic skills (which he seriously has), or that I feel 100% safe, maybe it’s that I feel he’s one of the least judgmental people in my life, or that I know Brad will listen and won’t take my “story” and make it his own, or maybe it’s that my subconscious knows this is my time to let it all out….maybe it’s all those things….but I start talking about one thing – me taking yoga and doing something for myself – and suddenly I’m divulging these thoughts and feelings that I couldn’t even pinpoint just minutes before.

Yesterday we were chatting about Yoga and how I am ready to make that a priority in my life, and that I’m allowing myself the space and time to do something for myself – when Brad said something about giving me accolades for being a wonderful mom who has put her children first and given everything in my being to them for 20 years and I said that I don’t want or deserve those accolades. And Brad pushed back – you don’t deserve or want that? Nope – I don’t. I don’t feel that I deserve any sort of medal or glowing acknowledgement for that….because that’s why I’m on this Earth….to grow good children. And because I still feel I’ve failed in at least one aspect of their lives, their religion. I don’t deserve it because I have failed in my promises to God at Tommi’s baptism. I haven’t taken Tommi to church and taught him God’s Word…afterall, Tommi tells me that he doesn’t believe in God. That he’s athiest. And that makes me sad and fearful because I have failed in my baptismal promise. And I can’t help but think what if something happens to Tommi, where will he go?

I realize that I don’t have to take Tommi to the physical building of a church to worship and believe. I don’t let Tommi’s views stop me from worshiping God and praying to God around Tommi and FOR Tommi. Brad asked me to take that part of me who feels sad and fearful and balled up and to put her in a room where Jesus and myself can be with her. To see that Jesus sees this part of me and comes to me and moves toward me with compassion. That he is not angry. That he wants to give that part of me (and me as a whole being) his compassion, peace, grace and love. That despite me feeling undeserving, Jesus is telling me that “it’s ok. you’re ok. Tommi will be ok” Brad and I discussed that Jesus didn’t meet his people, his followers, his disciples in a church….he met them in their spaces, in their sicknesses, in their sin and he brought with him his grace and peace and healing and gentleness. He did that, he gave of himself to those people, even though the world said he shouldn’t because while society said those people didn’t deserve it, Jesus knew that those people deserved it more than the high priests and leaders.

Up until today, I avoided this conversation with Tommi. He would say he doesn’t believe in God and I would not respond, or I would change the subject. But as I sat there with Brad, I realized that I’m now curious about what Tommi does believe in. And I’m ready to ask the tough questions. Brad asked me to visit this space we went to today, with this part of me and Jesus, before I move into the conversation with Tommi. To accept Jesus’s grace and peace and healing and gentleness before I ask Tommi “If you don’t believe in God, Jesus, the Holy Spirit, then what do you believe in? What do you think is beyond this world? Where in your body, your life, your circumstances was this non-belief in God born?”

Today, my amazing friend Tosha shared with me her thoughts on this sadness I feel deep in my spirit (although not nearly as deep and sad as before my session with Brad). She reminded me that most people struggle with their faith. The person who would tell you they carry 100% undoubting faith throughout their entire life is either rare or lying. Even my mom, the most faith-filled person I know has had times where she was angry with God and couldn’t pray. And that our faith usually is born out of our parent’s faith. But that not all people carry their parent’s faith through their own life. I show Tommi my faith…it’s up to Tommi to continue to live that belief or to move from that belief. And that just because right now, in 2021, Tommi says he’s an athiest does not mean that he will be an athiest in 10 years; and that even if he is, I didn’t fail Tommi or God. I raised Tommi in my belief system, and Tommi chose his path, and I will today and forever continue to love and pray for Tommi.

I will never be able to thank Brad and Tosha enough for their listening, love and support…God placed them in my life at this point in my life as a vessel to send His grace and peace and healing and gentleness to me. We are hardest on ourselves and are blessed when we have loved ones around us who remind us who we are and how much we are worth. And I will likewise use my voice and my love and my prayers and my witness to continue to send God’s love to Tommi. And we will see what path Tommi chooses to follow. But I will never stop trying to show Tommi how much our God and our Jesus love him.

Tommi is a month into online school with Connections Academy. For the first couple of weeks he did his schoolwork during the day while I was at work. Then he started getting migraines when he would sit at the computer for any length of time. Migraines so bad that he would cry and moan in pain and be nauseous for hours. So he has decided he wants to do his work with me in the evenings so I can help with the computer part of the work – so he stays up late, sleeps in, does who knows what during the days and at 8pm we go upstairs together and do his schoolwork. Do I love that? yes and no. He has good grades because I’m right there, reading with him and asking him questions and helping him get things done. But it does take a dedication from me that I wasn’t truly anticipating. It is my hope that as we move through this year, I can get him to start doing at least part of his work during the day when I’m not home. Our next stop is the eye doctor.

We’re also almost a month into Tommi taking no medication aside from medicine to help him fall asleep. Tommi has taken medication for ADHD for almost 10 years, and medication for anxiety for at least 5 years. We’ve tried so many meds, thrown the dart at the dartboard of medication and dosing more than I ever knew was possible. Medication for mental health issues is really such an experimental science. Let’s try this…….have we ever used this medication……we could do this combo……maybe we need to increase the dose. Our doctors have been amazing on the medication trail, but it’s usually a “let’s see what happens” decision and we never truly know if we’re making the best decision possible. Taking him off the meds almost a month ago seemed an easy decision. He’s in a safe place during the days, no large crowds of students in the hallways or teachers he can’t effectively communicate with. Our psychiatrist was really open to the idea and agreed with giving it a go….finding a new baseline and rebuilding from there. Brad was encouraging, and I think amazed that our psychiatrist was willing to go forward with no meds. Todd typically follows along on whatever I think is best. And Tommi was all for no meds. Since we stopped meds, I have been keeping a daily journal of Tommi’s behavior and emotions. I don’t document a lot, just rough patches, things he struggles with, the anxious moments; but also the calm moments, the positive changes, the laughter we’ve seen. I was super impressed two weeks ago when Tommi went to the Purdue football game with us and sat there the entire evening, playing his phone but also clapping to the school song, cheering when Purdue scored and talking a smidge to the guys sitting in front of us (who, btw, were super glad they sat in front of a mom who thought to bring a roll of paper towel to a football game to wipe off our wet seats!). He even told us at the end of the game that he wants to come back to the other games! This is Tommi med-free! In the last month, I have witnessed a big change in Tommi. He is happier, he is more interactive. He comes downstairs when I get home in the evening and he stays downstairs with us and the dogs throughout the night. He talks to us. He makes jokes. He laughs. He eats. He willingly goes upstairs with me at 8pm and does schoolwork with me. He still curses like a sailor and he still has a mighty temper – but those are not my worries when it comes to Tommi.

I’ve been a little sad this week as it’s Homecoming week at Noblesville Schools and there have been some fun posts on Facebook of Tommi’s teachers from elementary and 6th/7th grade having homecoming fun. It makes me sad that he’s not in that in-person school setting. That he doesn’t have that teacher/student and student/student interaction and the fun events of school. But it doesn’t make Tommi sad. So I need to just have my moment and move on.

The world of mental health/illness is much like that merry-go-round on the playground (you know, the old rusty one painted in the primary colors that your friends held onto one of the bars of and ran alongside of until they finally jumped on and you both spun around on so fast your head was literally spinning when you finally made your way to the safety of the ground!). There are days when we get on and the ride is slow and gentle – like your grandma was the one pushing the merry-go-round. There are days when you are flying so fast, but laughing so hard that you can’t see the world as it’s flying past you because of the smiles and laughter that fill the space around you. There are days when you’re the one running along, trying to push the merry-go-round for your friend, when you’re just trying to keep up and make them happy. And there are days when the meanest bully on the playground spins you so fast that you fall on your face. But no matter which merry-go-round Tommi and I are on each day, we’re on it together.

A few weeks ago, before he went off meds, Tommi and I had a real row one evening. We were supposed to be going somewhere, he was having a moment of no confidence and nothing to wear and complete irritation and I was making it worse by consistently saying “come on, we have to leave. Let’s go.” And in those moments of Tommi yelling “I’m ugly, my life sucks and I hate being in this family and I just want to die” I made a statement that I’ve had in my head before, but I’ve never ever said it outloud until that day when I said it outloud to Jackson. Tommi didn’t hear me say it. But Jackson did. And God did. And I immediately felt horrible for having said it. For giving life to those thoughts/words. And I carried that with me for 10 days until I got to talk to Brad and those words, the sorrow, the guilt, the anger flowed out of me and into the safe space Brad creates for me. And Brad made those words ok for me to have felt, thought and said. He reminded me that I have the toughest job on the planet – parenting…but not only parenting…but parenting a special needs child. And I am not the first, nor will I be the last, that would utter words of despair toward/about their special needs child. He asked me what God would have said to me had he been in the room at that moment…and I told him I thought God would be disappointed with me and would think I wasn’t a good Christian. And Brad immediately and firmly disagreed. He reminded me that when Jesus was praying in the Garden before his crucifixion, he asked God – his father – to take this cup from him. To not make him complete this task God had handed him. And that God said no. God heard his cries, heard his overwhelming fear, heard his heartache, and yet God said no. I know this is hard. I know you deserve better. But I will not take this cup from you. And Brad made me hear that God would say the same to me in that particular hard moment and in every hard moment. God has the master plan. He knew Tommi was coming into this world. He knew that Tommi would have many struggles. He knew that Tommi needed me and that I needed Tommi. And He knew that even in the dark days, the yelling days, the days when I want to throw in the towel and say “I give up” that He will remind me that I am enough. That Tommi is enough. That He will fill us with grace and love and help us find a way to continue to put one foot in front of the other and keep walking forward, even if it’s with baby steps. Mental illness is hard. But with God’s grace, Tommi and Todd and Jackson and myself will keep moving forward. That’s what families do. Thats what our village supports us to do. That’s what God wants us to do.

Dear Lord, Hold my hand when fear threatens to overwhelm and disable me. When I feel inadequate, insignificant or discouraged. Give me the strength to keep going, the courage to stand up for what I believe in, and a desire to give you nothing less than my very best. Give me faith that conquers fear. Help me to be prepared to endure everything with patience, while joyfully giving thanks.

So my grand plan of getting Anon (Izzy) back into the school setting last week flopped hard. All summer he had made small comments about how he didn’t want to go to West, how he wanted to go online. And each time Todd and I would say “we’re going back in-person at West.” We had a pretty big “fight” about it several weeks ago, and with moderation from Jackson we all agreed to give West a try for 1 semester and if it doesn’t work, we’d go online. Anon agreed to that…although I now know it was just to appease me.

So last Monday off he went to West. Morning was uneventful. He got in the car easily and rode to school without seeming anxious. He was met at the car door by Mr Stafford and got out and went inside without looking back. I felt great. I worried about him all day, but heard only to ask about where he was to eat lunch, and then where to find the bus. I texted him when he got home and asked how it went and he said “pretty good.” Jackson reported that he arrived home in a good mood.

And then the evening came. Todd went to Scouts, Jackson went to hang out with “the Culvers boys” and I was home with Anon. He went upstairs after a bit and suddenly I was getting angry texts. That he couldn’t go back to West tomorrow, that he hated it so much and that if I made him continue to go to West he’d hurt himself. He couldn’t breathe in the hallways because there are so many people; he couldn’t get to his locker because his classes were downstairs then upstairs then downstairs again – so he was carrying his VERY HEAVY (truth) bag and it just banged into everyone in the halls and made hallways even worse. That he was scared of communicating with his teachers, and he was scared. He wanted to go online. He needed me to listen to him and not make him go back. There was a lot of yelling and a lot of crying from him….and while I thought he may have been manipulating me (I even asked him that), but I was uncomfortable enough with his words, actions, and threats of self-harm that I was pretty sure this was a very real thing that we needed to really listen to.

Jackson talked to him when he got back home, with similar results. And once he cried himself to sleep, I reached out to his Clinical Director, Angela. Angela listened, and advised, and said she thought we needed to listen to him and let him be online, or a hybrid online/in-person program. I had mother’s intuition that she was right… we had to change our course of action.

So here we sit a week later. We have submitted all the information to IN Connections Academy for enrollment. We’ve dis-enrolled from Noblesville Schools. We’ve bought a new desk and a new computer to have a computer that is up to date and fast enough that Anon can use for school. So once enrollment is complete on the school’s end, we will be up and running online. The ability for Anon to start a little later in the day, to have a more flexible schedule, in a quieter and definitely more comfortable/safe space will hopefully make the difference. And even though I anticipate having to be heavily involved in his schooling this year (making sure things are getting done), I hope this will be the answer for this year.

What did I learn through this experience?

I learned that my neurotypical brain has certain expectations for my child, but that my neurodiverse child’s brain needs other things to be successful. That the hormones and changes that my neurodiverse child is experiencing are going to effect him far more significantly than a neurotypical child. That I need to listen to what he is telling me and take that with seriousness and sincerity, not as glib banter. I do not have all of the answers, and it’s not my way or the highway with this child. We need to work together and compromise and I need to continue to learn and speak his language every step of the way.

So here’s to 8th grade…take 2….sometime this week, we hope.

I’ve had several friends reach out to me privately since my last blog entry and Grey’s recent coming out post on Facebook which I included below.

And this is my response to those beautiful friends who are concerned.

Thanks for reaching out. Our journey with Grey has definitely been one of twists and turns. And I’ve learned so much about being an advocate and an ally, about fighting like hell to get what’s needed and celebrating the seemingly small things. This revelation from Grey was not surprising. It’s something his birth(sister)sibling is going through as well and Grey has, for the past few years talked about lgbtq+ issues and thoughts with regularity.
I don’t let it bother my religious stances. To be honest I have several gay and lesbian friends and they all believe in and love God and I figure it’s not mine to judge, God will take care of that. And I know that if I were to go all “God talk” toward Grey I would lose him.
I have worked nearly 14 years to learn the language that Grey speaks. And I’m fairly proficient in it. Ive learned that NOT hugging or NOT talking can be hard for me, but forcing those things on him would be devastating. I am Greys person in this world and I have to support him in this. He needs me to do that. And if I don’t do that, my past 14 years of advocating for him would have all been false. Do I think that this is a forever decision, that this will be his forever chosen path? I don’t know. But I do know that this is where he is currently and I will meet him there.
Am I struggling? Yes. Sometimes. Talking about binders and pronouns and gender types and all those flags and future surgeries and hormones etc literally terrifies me. But I have to put my trust in God and take it one day at a time.
So keep me and us in your prayers and lift that heavy heart that you’re carrying about this. I’m ok. ❤️

And to my two amazing friends who sent me the following texts…what would I do without amazing cheerleaders for me and my Grey?

I welcome your questions and concerns and yay-rahs! It helps me feel even more ok, and very loved.

I’ve opened and closed this blog post over and over for days. I have so much I want to say… so much of it is not mine to say aloud, but permission has been granted. With Iz as our tour guide, we have entered a new world, a new reality. In this reality there is fear and grief, and pride and support, and questions and education. It is a reality full of pronouns and flags, acronyms and unknowns. New words like gender fluidity, trans, binders; new names, dead names.

We’ve joined many “worlds” in our 14 year journey with Izzy. Adoption, Adhd, anxiety/depression, Autism, Trich. And now LGBTQA+. As we have approached each one, they’ve all seemed foreign and scary from the edge of the world…and they’ve never come with a map….but we’ve always found our way.

This is a hard world to enter, but at the same time it also isn’t really. The parent support groups I’ve found are wonderful to be part of. The people there are understanding and helpful. They know what we are going through because they’re in the same place or were there not too long ago. It’s a place I can go to for advice because I don’t have any friends I know of who are in this same world we find ourselves in.

My family and the few friends we’ve shared with have been amazing. Very supportive and full of love. And Brad is helpful in keeping me focused and keeping my severe anxiety of screwing this up at bay. He listens and loves. He uses the correct pronouns and name. He puts it all in perspective for me.

Our next hurdle in this new world is school. Landing on a gender neutral name that Iz likes and that we and the school can use. And then making it known to those that need to know at NWMS. I feel more confident in her decision to be at NWMS this upcoming year bc I feel it will be a more diverse and accepting place for her. That is my fervent prayer.

If you could keep us all in your prayers as we explore this new world, it would be greatly appreciated. I don’t know if we will become permanent residents of this world, but for now we are at least long term visitors. 🌈❤️🌈 As long as Iz feels loved and safe, then we know we are on the right path in our new world.

I’ve had a stomach of anxiety for the better part of a week now. I use my Brad therapy techniques and try to work myself through it, and feel better for a few minutes and then that anxiety creeps right back in. Sometimes my anxiety resides in my chest, this anxiety is firmly positioned in my tummy. And this anxiety has Izzy written all over it.

She had a moody weekend. It happens to the best of us and I don’t hold it against her. She has a lot on her mind and she talks a little about it, but holds a lot back I think. She too had a stomach of anxiety I think. She did want to be near me most of Sunday, which is always nice, and she did give me a peak into what she’s thinking, but I know there’s so much more under the surface that she needs to let bubble out. She’s also mentioned a couple times of late that maybe she should talk to a therapist. And her talking to Brad is so hard because she hates Zoom. So the search is on for a therapist who can connect with Izzy, who can handle mood swings, unkind language and tough love. A therapist who will let her be silly when she needs to be and comfortable enough to be serious as well. A male therapist, because she relates better with males.

This new therapist has big shoes to fill. BIG SHOES. And big hair (haha!). For the girl….and for her mama. I will continue to see Brad, I can’t give his awesomeness up! And he completely understands Izzy struggles with virtual interaction and wants Izzy to find someone here she can talk to and trust. He’s given us a recommendation, and I know if I ask that he will happily share his knowledge with whomever we find. I actually interviewed a potential new therapist today. Connor. Connor sounds young. I told him all the tough things…the raw truth about Izzy and her relationship with her therapist. What’s going to work, and what won’t. Connor said “no problem, I can work with that.” Connor sounds confident. I tried to scare Connor off. Connor sounds ready for a challenge. Something about Connor sounded a little like Brad….but we’ll reserve judgement (Harsh, I’m sure) until we’ve met the guy. We took a long drive tonight just Iz and me. She’s most open in the car, our daily 40 minute drives are the only thing she and I miss about the ABA days. She agreed to give Connor a try. Excellent. I’ll now be holding my breath until July 1st…..

We are in unchartered territory in Izzy’s life right now. Isn’t it always, you may ask…touché. Our 13, autistic, anxious, depressive, trichotillamania child continues to keep me on my toes. Life would be boring otherwise, right?

Izzy has a boyfriend. He’s online, they’ve never met in person, but I would venture a guess that he may know her better than most of her in-person friends over the years have. Her boyfriend’s name is Ollie…which I (in my vanilla mind) assumed was short for Oliver, which it is. But Oliver was previously known as Olivia. Ok. Whatever. If Ollie makes Izzy happy, and laugh, and feel good…then Ollie is a-okay in my book. And Izzy is working through some gender identity and exploring pronouns that would make her feel most comfortable in her skin. And ya know what…..that’s fine too.

I grew up literally in the middle of a cornfield in the 80’s and 90’s. I went to a small school where I don’t think we had a black, hispanic or asian student at least until I was in high school. My parents were married…to each other (and still are!), they both worked, no one drank or smoked, my sister and I were pretty good kids, we weren’t rich but we didn’t want for anything legitimate (I guess nightly Dairy Queen trips or those cool Guess Jeans weren’t legitimate needs)…life was simple and vanilla. I went to Purdue for college and Miami for grad school and found some variety in my classmates there, but everyone in my life was still pretty much like me. I’m going to venture a guess that I didn’t really know someone who was gay (lesbian, trans, binary…all the words) until I was out working in my profession. Vanilla life.

I remember when Jackson was a Sophomore or Junior at NHS, one of the other members of Marching Band decided she was more comfortable identifying as a he, and changed his look and name accordingly. I was floored – Jackson was not. I asked questions, Jackson listened and answered to the best of his ability.

Several months ago, Izzy said “I could be gay, mom.”

“OK. As long as you’re happy, I don’t care.”

“Really? You’d be fine with that?”

“Why wouldn’t I be?”

“I don’t know….I expected you to say “Oh Izzy, you’re too young and dumb to decide that.”

I hate that this was her expectation. And I’m working hard to change that for her. I’m planning to talk to Brad. I’ve talked to Jackson. I’ve talked to a member of my staff who is gay. I’ve researched and read and explored. I’ve looked up definitions to words I don’t know. I’ve broadened my vanilla horizons. I’ve dug deep into my emotions as Brad has taught me and found my basement emotions that I need to validate and listen to. I’ve done it all…because do you know what the most important thing is to me? To not screw this up! To make sure that my Izzy knows I’m here for her no matter what. Gay, Straight, Bald, Autistic….I don’t care. Please just be safe and happy and kind and loved. Those are the toppings on my vanilla sundae…that my kids are safe and happy and kind and loved.

We went through every piece of clothing the kid owns this past weekend. Keep it or send it off. Is it “the you of today” the “you of yesterday” or “the you mom thought you were” Her wardrobe is a lot less frilly and pink, but it’s comfortable and true to Izzy in the moment.

I don’t want to be my children’s friend. I see fellow mom’s I know being their kid’s friends…and it never works out the way they want it to. But I do want to be my children’s safe harbor. That’s what my parents are to me…they are my harbor in the storms of my life. I want my kids to know that I will not judge them, I will not cast them out and say I can not/will not support you. I want my kids to know that from the day they were born until the day I die, I’m their cheerleader, comforter, #1 fan. I am proud of the people they are becoming and I will stand by them through the storms of their lives.

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.