Our daughter Mckenna is 18 years old. She is our first born, and she was placed in our arms when we were only 18 and 20. She is intellectually disabled, on the autistic spectrum, has major depressive disorder, OCD, and oppositional defiant disorder. She is also a burn survivor; at age 8 her shirt caught fire in our kitchen and she sustained third degree burns on 20% of her tiny body. She was hospitalized for three months. She almost died. Kenna has never been quite the same since that tragedy, and the last ten years have been incredibly difficult parenting her as she pulled further and further away.

To give you more of an idea about what I’m talking about, here is an excerpt from a post I wrote in August 2010, titled ‘More on the Subject of Truth’.

“And something I didn’t go into on that last post. I didn’t get specific enough about what I was dealing with. My daughter Mckenna has an undiagnosed neurological disorder that causes her to have major agitation over simple household noise, major issues transitioning from one thing to another, (even something as simple as getting out of the car), and obsessive compulsive tendencies. She is unpredictable in when she will melt down, but melt down she does. And often. In a meltdown she screams, she will try to take off her clothes, she will lay down on the ground. Often in public, right where people have to walk around her. She will stop everything she is doing, like a stubborn horse you can’t get to move an inch. You pull and yank on the reigns and plead and beg and they just dig in their heels. So does she. She will yell curse words. This started in middle school – she doesn’t know when not to curse like the rest of the kids. (Around teachers and parents.) She has zero social or safety awareness. She has no idea people like their space, and will walk up to someone and touch them inappropriately as she says ‘hello’, or ‘hi, dude!’ She has no idea that she could get hit by a car in a parking lot. In 2006 she left our house unannounced twice, and took off on foot. One time before 6am, when everyone else was asleep, the other time when the kids were playing outside and I was upstairs folding laundry and didn’t realize she had left. Both times we were frantic to find her, and were lucky we did. After her second attempt, we purchased a $300 personal GPS system that she had to wear for months. If she got more than 10 feet away from the base, her bracelet would ring an alarm. A lot of the time, her safety is out of my control, and I live in fear of what may happen to her next. She is intellectually disabled with some autistic like symptoms. We don’t know why and we probably never will. It isn’t for a lack of trying. She is fourteen years old and we have taken her to the doctor to try and figure her out countless times.”

This is another excerpt from a different post in August 2010:

“The confusing thing with Mckenna is that there are moments of astonishing peace and joy for her, … Those are the moments that hold me over through the bad ones and make me sane, but they also tease me into believing that she can have MORE moments like that, if only I try harder. If only I give more. If only I fix her.

And I can’t. She is not “fix-able”. Whatever good moments she has, are most likely nothing to do with me. Just like whatever bad moments she has, are most likely nothing to do with me. They just are. They just exist for whatever reason the synapses in her brain allow them to exist in that moment. She is unexplainable and impossible to solve. Mckenna is not free. She is locked up and hidden from me most of her days and most of her life. Those moments that I cling to are few and far between, and yet I kill myself everyday to try and get more of them.”

Those words were written almost exactly four years ago, at a point in time when I was staring down the tip of a very large iceberg, beginning to see that something needed to change. Up to that point, we had tried everything we could think of to help her, but she wasn’t making progress, and she wanted nothing to do with our family as a whole. In fact, her behavior was getting worse by the day and she was sinking into a hermit like existence, even refusing to go to school. My overwhelming desire to keep my family together, which I had decided was “THE RIGHT WAY” , was no longer working. I was finally able to see that we needed to respect her need for independence, and that we couldn’t continue in the same way we had for years.

And we finally got some help.



First, we told our Regional Center caseworker that we needed help. We called emergency meetings and made necessary changes to Mckenna’s yearly goals. We were awarded more respite hours, behavioral therapy four times a week, and given an appointment for a major psychological evaluation. At this point, she was just about to enter high school. “Miss Pam” was her new teacher, and she was an ANGEL IN DISGUISE. She worked side by side with us on Mckenna’s behavior plan to make sure things were consistent at school and home. She constantly went above and beyond for our family.

Just one example happened right away as we struggled to get Mckenna to ride the bus. Pam knew this was an integral part of Mckenna’s impending adulthood and vital to her independence, so she needed to master it. Pam talked to us and we decided that she would get two choices: “bus” or “walk home”, about three miles. Well, the day inevitably came when Mckenna chose “walk home” and Miss Pam walked with her all the way to our house. Mckenna never chose “walk home” again. It takes a huge level of commitment and competence to do something like that as a teacher, and I will never forget it.

Something else we needed to do was find people that could be with Mckenna while we got a break. We had never, ever left her with anyone other than family, every once in awhile. Pam pushed me gently into this, knowing more than I did how much we needed it. She connected us with people in the special education community who were looking to work, and we hired several of them to help us at home on a weekly basis.



Oh yes, and that psych evaluation. It was a three hour appointment that took place at UCI. A handful of specialists from the same psych department took turns observing Mckenna, and interviewing Jeff and I. That was when we got the diagnosis’ that I listed in my first paragraph, along with a prescription for an anti-depressant for Mckenna. It was given in the hope that it would help her come out of her seclusion, reduce depression and anxiety, and help her sleep. None of the disorders we use to describe our daughter are the big answer – we still have no idea why she is the way she is, why she was born this way – and we are in good company, part of a large and ever growing percentage of families that have children with some type of undiagnosed neurological disorder.



Over the next few years, we worked closely with behavior therapists, school personnel, and her psychologists to get her to a higher functioning place. She never went back to how she was before the burn. She didn’t decide to start eating with us again, or go on outings with us, or vacations. She still had meltdowns, however they were less frequent and less severe. There became a new normal. She thrived on her outings with caregivers and in her social peer group that met once a week. We moved our regular house cleaning day to Saturday, so that the woman who takes care of our home could also keep an eye on Mckenna. That gave the rest of us one day a week to leave the house together. One day a week to have freedom and connect with our other kids.

Letting go of the idea that we must all stay together gave us a new kind of life.

Mckenna began to look forward and depend on her quiet Saturdays spent at home with Olivia, and we loved our weekly family day. It became precious to all of us. We saw that if we stayed home on a Saturday, or if she wasn’t getting to go out independently during the week, her mood and behavior became worse. So we made it a priority.



What became difficult at this point was the stark contrast. Suddenly, we were juggling two separate family units. One with Mckenna, and one without. And it was hard to navigate for awhile. When you are living your life day in and day out dealing with a very difficult child, you don’t realize how hard it is and how exhausted you are until you take a step away. Once I stepped away into the “normal” world with my other three children, we all relaxed, and I could see how toxic Mckenna’s personality and behavior could be to us. And that…sucked. That really fucking sucked. We would go out with the other three kids and have a lovely, spontaneous, carefree day, and then come home to a violent meltdown or a very dark mood. And that would hurt so much. So, so much. It was almost to much to take at times, and there were many parental meltdowns of our own. It brought on so much pain, to be faced with that contrast. Not only was I suddenly very jealous of people who lived their lives with typical children, it saddened me greatly that she couldn’t assimilate into our world. I would just cry and wonder, “Why did this happen to her? Why can’t she be happy? Why is she so angry? Will we ever be able to make it through this?”



It was in her sophomore year of high school that she started talking about turning 18. She would say to me, “When I turn eighTEEN I am going to go to college. When I turn eighTEEN I am going to move in with my friends.” The first time I heard that come out of her mouth you can imagine my shock. I was like, “Oh, realllllllllllllly?!” I had been talking for years in therapy about the possibility of Mckenna not living with us at some point. I never imagined it would happen. I didn’t even know that she would understand the concept. But oh, she did. And she didn’t stop talking about it from the time she turned seventeen.

Every single day, multiple times a day, we were asked, “When do I graduate from high school?”

“June 2015.”

“When do I go to college?” (She refers to the Adult Transition Program which runs from ages 18-22 as “college”.)

“July 2015.”

“When do I move in with my friends?”

“When you graduate.” (And then the wrinkling of the brow as she realized she didn’t like our answer.)

And over and over, and again and again. We were suddenly faced with the choice we never wanted to make. But more than anything else that we know about Mckenna, we know that she knows what she wants. And if this was what she wanted, we would figure out the best way to get it for her.



Again, I went to Regional Center and told them the newest information. We learned about our options for housing and support after she turned 18. We learned that we needed to be granted conservatorship over our daughter. That meant we would have to hire a lawyer and go to probate court to take certain rights away from her because she was unable to make certain decisions. (Medical, financial, etc) After hearing about many housing options, we decided the best thing to start with would be a group home. She would be in a familiar home type environment, but have more independence. Since she worked well in a group setting at school, and needed a lot of assistance and care, this was our best bet. We decided to look into our options and wait until she was out of high school to make any changes.

Except, Mckenna had other plans.



Once she turned eighteen in the spring of her junior year of high school, she began getting more and more annoyed that she wasn’t moving out or going to college. She still had over a year of high school left, and it was really bothering her. Her behavior ramped up, she was later and later to school every day, and she would get angry when we couldn’t give her exact dates for when she would “move in with her friends.”  She just started going downhill, and we were very concerned. Jeff and I honestly didn’t know how we were going to make it through another year of school, when she was so unhappy.



I don’t remember how we came up with the new plan, but it seemed like one day we thought of the idea and the next day it was all put into action. Everything happened so, so fast. It was just like, LIGHTBULB, why are we making her stay in high school when all she wants is to go to college? We asked our district if we could change her status to a senior since she was 18, meaning she would graduate in 2014 instead of 2015. They said yes. In March of 2014, we held an IEP. (For those not versed in the special education system, an IEP is an Individual Education Plan, held once a year.) We began the process of moving her to Adult Transition, which is the last step on the special education rung. Our Regional Center caseworker started looking more seriously into group home locations for us to visit and check out. We desperately wanted her to remain in the same school district, as close to home as possible, but we also knew that if we found a home that was an hour away that Mckenna loved, we would do that, too.

We told Mckenna that she was a senior and that she would graduate and go to college **IN 2014**. I wish you could have seen her face. It was relief and joy and excitement and pride all rolled into one.




Mckenna’s story continues soon.

To read more about her past, you can click the “Mckenna Mooneyes” tag beneath this post or click this link.

You may also be interested in checking out the #mckennamooneyes hashtag I’ve created on Instagram.

**The photos used in this post were taken on her 18th birthday and on a Disneyland trip to celebrate her, with film and a Nikon One Touch.




Join the Conversation


  1. Tara, I’ve been following you and your blog for a long time. I remembered when Mckenna was burned. I have watched her and your family grow. I teach 3 and 4 year olds with autism and intellectual delays. I get to meet parents as they are beginning their journey into the world of special education and realizing the path will be different for them. I always try to get parents thinking about more than just tomorrow, but what their long term goals are for their child. I am loving reading this because it gives me more insight when I talk to parents. I know the decisions must be so difficult for you and your husband but I also know you’re doing what is best for Mckenna and your family. Thank you so much for sharing this.

  2. Tara, Thank you for sharing this. Sometimes when I’m frustrated with my kids, you are a source of strength for me because I cannot imagine how you & Jeff navigated these waters with the grace that you have. I cannot believe it’s been 10 years since the burn. You are a true inspiration. Your whole family is.

  3. Here in New Hampshire children stay in school /school program until the age if 21 then the area agency programming begins-is it different there?

    Many kids graduate with their peers then come back for “post grad” years until 21

  4. Oh, Tara . . . you know I’ve always considered you a soul sister of sorts (since we are, after all, twins. LOL) . . . and I’m sending a big cross-country hug to you right now. Your family — in its entirety — is something special. What you’re doing with McKenna truly exemplifies the whole giving your kids roots and wings thing. So difficult . . . but you’re doing it with so much grace. <>

  5. I’m so happy to have read all of this. I’ve been following you for a couple years now, and on instagram forever. I never actually knew McKennas diagnosis, but being an elementary teacher with a special ed degree, I had a pretty good idea. I always loved the way you handled it and included her when you could, and didn’t when it wasn’t best for her. The best thing you could do!

    Both of my parents work with adults with intellectual disabilities. My mom is the executive director and my dad actually works at a home with a couple men. They both have worked here over 20 years and my entire life has been spent around adults with different kind of disorders. I learned A LOT! And I’m so thankful for all of that because I felt like it helped me decide on a career as well as be so accepting of every person dealing with any kind of thing. I’m so happy you decided to move graduation up for her, she will love it so much! It will come with so many challenges and obstacles, but hell, what doesn’t, right? I can’t wait to hear more about her story and see what comes next. Keep on being strong and the awesome family that you are!

    Love that picture of her in the elephants and how much joy she shows! I’m so jealous of all of her accessories!

  6. Oh goodness. I cannot express how much I love this post. I’ve been reading your blog for longer than I can even remember. I have a few kids with challenging behaviors and it can be SO isolating at times. It’s no fun walking around with a time bomb. Thanks for being vulnerable!

  7. Thank you thank you for your brave telling of McKenna’s story. I am forever changed by my wonderful years with her. Love you and your beautiful family.

  8. Thank you soooo much for writing this and for the luck that I was able to find this. I read every.single.word and finally felt for the first time in 7 years that there IS someone else out there that knows EXACTLY how I feel. I have twin girls who were diagnosed with a seizure disorder and are mental and physically delayed among other issues. They have both just started with the behavioral disturbances over the past year and I too have felt the exhaustion and felelings of failure as a mom. I’ve often wonder if it would get better…I know it won’t. It’s like your post was an insight into their (our) future. I know I should feel guilty for the way I feel but there are many times I want to give up. I know I have to keep going for my two other normally developing children . I just wanted you to know that you’ve helped me without ever knowing me…thank you!

  9. Hi Tara, I’ve been following you since the ole scrapbooking days. I just wanted to say thanks so much for sharing your awesome story about McKenna. I actually went back to school 2 years ago and am close to finishing up my Special Ed degree. I hope I am able to help kids and parents out in this way. You guys are pretty great.
    Karen Lee

  10. Wow. I am in tears and admire you and your strength. I work in the special ed world. I know that this doesn’t mean I understand completely because when the bell rings, I go home. I am amazed by her teacher walking home with her. What a beautiful person who clearly cares for the children she teaches.The photos are haunting me (in a good way.) They are so powerful and I also love the other people surrounding her in the photos..clearly in love. Oh, and she has some bad ass style!

  11. I have loved and followed your blog for years. I don’t know your family but you have a way of making me feel like I do. I’m in awe of your strength and love and unwavering commitment to your daughter, even when you don’t understand her or what exactly she needs. Love your heart. :) Thank you for sharing it here.

  12. I’ve been reading your blog for 5 years and I remember when you wrote that post 4 years ago. My heart ached for you and your family as you struggled through this. I’m glad that things have started to get a little better and that you have a new plan for the future. Best of luck to all of you!

  13. I stumbled upon your blog some time ago when I was looking for photographers. I’ve followed you off and on ever since. All I know is that you are so very real. As a mother I can’t even imagine how many times you’ve looked in the mirror, eyes red from crying, wondering how you were going to make it through another day. How would your family survive? Just how much were your other children being affected by their sister’s behavior? What is going to happen to her when I’m gone? And here you are. Letting her go. Knowing it’s the right decision no matter how hard. And you’re just like every other mother sending their first born off to college! Beaming with pride while a little piece of your heart breaks off. Thank you for sharing your reality with us.

  14. Tara,
    I am a long time, dare I say, fan? Your strength and courage is so very inspiring.
    I admire you as a mom, just your gift for being a real, open, down to earth mom.
    I am in awe of your gift to be McKenna’s mom. Despite all the trials and tribulations you never give up.
    You deserve mom of the year over and over.
    I love to hear your stories and your pictures just are the cherry onte sundae!
    Thank you for sharing with everyone what unfailing, committed love is like.

  15. Hi Tara, I work in human services out here in Boston, MA. I have followed your blog for a long time. I transition young adults (here it is 22) into my group homes and I work with families with the transition as well. Families often take the transition harder than their child. I am glad to hear you and your family are open to looking into adult services for McKenna as she journeys in to adulthood with her own vision for her life. There are great people out there that will help her continue to grow, in her own way!

  16. I last commented on your blog when you wrote about life with McKenna before. I have a 34 year old sister in law, Kylene, who has Down Syndrome. She can be delightful and very funny! She’s the best aunt my children could ever hope for. However, she is stubborn as an ox and very frustrated by her stunted adulthood and lack of independence.

    Sadly, my mother in law passed away five years ago, and my father in law is hell bent for leather on keeping Kylene home with him. The girl talked of nothing BUT her own apartment from the day I met her. It’s sad to know she isn’t living the life she wants so badly. She has worked in a bakery for 16 years and takes enormous pride in her work…just DON’T even think of asking her to perform a task she doesn’t believe relates to her job. :) So, she’s on the cusp of independence, but probably won’t get to experience it for years.

    You are doing a GREAT thing for your girl! It’s obvious you love her with every fiber of your being and are a tremendous mother. I read something once that said “If you ever worry you’re a bad mother, you’re definitely not. You care enough to worry you are.” So, well done from a friend from afar!

  17. Beautiful story telling …. you and your family are A.M.A.Z.I.N.G Mckenna is blessed to call you mom. Can’t wait to read part 2 and watch your butterfly grow her wings. You are so brave to give them to her. Thanks for sharing your heartbeat with us!

  18. Tara I’ve followed you for years as well and just so appreciate your stark honesty. Sending hugs from a fellow mama. You are a warrior mama. Thanks for sharing your story with the world – we need more honesty.

  19. Gosh, you guys are some kind of wonderful!!! I loved reading your story and feel super inspired …I follow you on Instagram and have sent you love and good thoughts, so often xo I know we’ve never met, but I am so proud of all of you!!!!! Really really. For your honesty, as much as your steady advocating for Mackenna, listening to her deeply, and forging ahead with her vision. Amazing work you are doing in the world and I am grateful for your sharing!! Tracy xo

  20. Tara – you and your family are amazing. I have been a fan from waaaay back when I discovered you on 2 Peas. I have always admired your photography.

    I kept you all in my thoughts when I had read about McKenna’s accident and was relieved that she pulled through.

    I am still a fan and will continue to admire you.

    You are such a good mom!

  21. We have a son that has many challenges, though not as many as your daughter, we are struggling. He is incredibly oppositional and refuses any treatment and self medicates with drugs and because he is 16, I can’t do anything to help him. I can’t even get him an appointment without his consent as of the age of 14. Crazy. The impact on our marriage, on our family has been tremendous. We are still in a “bad” phase. It’s been 3 years with things progressively getting worse. I feel so judged, and like no one can understand because everyone around us has “normal” families. My son falls into a 2 in 100 percent rage. It’s been so hard. So heartbreaking. It’s so brave of you to share . Thank you.

  22. I took a class with Audrey Woulard this week and she asked what photography inspires you. I said you and your photography inspire me (and she said that you had taken her family photos!), but until tonight, I didn’t realize you inspire me for a whole new set of reasons. I too have a special needs child, a little boy who was diagnosed with a rare genetic condition just weeks after his fifth birthday. We too looked for answers for years (since the time he was six months old) and really little has changed with his diagnosis. I worry daily about what the future might hold. Sometimes the world seems a very lonely place when you don’t know how to help your child. Tonight, reading this, I realize you not only craft portraits with your images but with your words. From the bottom of my heart, thank you for sharing a very candid look of what it means to love a child with frequently difficult needs and the process of letting them grow up and the importance of taking time for the needs of your other family members. I will be looking at Mckenna’s story. Happy Birthday to your sweet girl and all the best to you and your family in this new chapter.

  23. I can relate ton so much of this post. My daughter has adhd, major mood disorder, oppositional defiance disorder, and bipolar. For so long we tortures he and ourselves by believing that our life together had to look or be a certain way. I wish I’d known better before she turned 18 and moved out. I wish I’d known that it was okaymfornus to create a life that worked for all of us. Bravo to you for finding a way that worried.

  24. what an incredible life you have given her. thank you for sharing. ironically as i picked up my 10 year old from summer school today, a young student with his mother near his side shouted ‘i fucking can’t stand this school’ as all the students were walking out. admittedly my initial reaction was ‘my god, what is wrong with that boy’ but after i watched the situation unfold, i immediately felt sympathy for the mother, the family, and for the boy. he clearly couldn’t control his feelings. the mother only knew to stay near him but had to refrain from any reaction. it has stuck with me. then i read this. i cannot fathom your day to day and i also cannot put into words how much respect i have for you. i look forward to reading more of your daughters story. and again, thank you for sharing.

  25. I love that you wrote this, and I too love how much you love your kids. I started reading your blog before McKenna got burned. I remeber those pictures of her so tiny riding around in a wagon at the hospital. It always stuck with me. I don’t know what to say, except I’m so happy you’ve found the strength for everything. Wishing you much peace always.

  26. i feel so honored for being given a glimpse into your world. thank you so much for sharing part of your story. i am a long time fan who has often been stopped by a photo and as i would savor the image i would think about the warmth and kindness you must have had at the moment you took the photo. only someone with some deep sorrows can have that kind of gentle awareness and see the beauty in such small details.
    thank you for sharing. this is so true and real and i feel graced to have been able to read it.

  27. Tara, thank you for being willing to share your heart so openly. I can relate to many of your thoughts and feelings. While my son is on the more high functioning end of the spectrum, I have similar fears as he approaches 18 (he will be a junior this year). In fact, we have spent part of our summer at Regional creating a plan to begin preparing for post-secondary transition. It helps to know I am not alone in my anxiety. Since I began reading your blog more than ten years ago, I have found your willingness to share your family’s journey to be both inspiring and encouraging. Thank you.

  28. wow- what a post. Thanks for sharing. Everyone has a story and your story is no doubt terribly difficult at times, but the way you just described it with such grace, triumph and letting go is really, really inspiring! Thanks!

  29. This is why I’ve been reading your blog for the past 10 years even though our lives are different. There is a realness, depth and openness about you that I just don’t get through reading other people’s blogs. And on top of that, you’re a mother and you’re freakishly gifted and stylish!

    Your post reminds me that our children don’t come FROM us. Rather, they come THROUGH us. Our job is to love them the best way we know how and guide them but they aren’t supposed to be little versions of us–we can spend our whole lives beating ourselves up over the fact that they aren’t. (If they were, we probably could figure out or fix them.) McKenna existed in spirit before you knew her and she will continue to exist in spirit after she leaves the earth. Her time with you is short by comparison. It’s a stop on her journey. God/the Universe knew what it was doing when she/he/it sent her to you–or you to her–even though I’m sure it has often felt like a mistake. Grace and peace to you, Tara!

  30. Thank you so much for sharing your heart on this. I have been watching your kids grow up since back in the scrapbooking days. You are a good mom. You love McKenna. You love your family. I too am raising special needs kids and have no idea where my violent 11 year old will be at age 18. I think you decision to help McKenna move out is a wise one. Hang in there. You are not alone.

  31. You are an amazing woman and a wonderful mother! Your family is so blessed to have you. Your life is very difficult, and you are a shining example of persevering through a hard life.

  32. Your sharing your story hits home a little bit .. with the passing of my mom last November ..us siblings have had to rearrange the conservatorship for my brother … we decided based on location (I’m out of state) that I would be the “silent” one …

    My brother is in a “Group” family home .. in Pomona CA .. a wonderful place where he has thrived for 30+ years .. Padua Village (An organization my parents helped start) and Casa Colina Rehabilitation Center a joint effort…

    I hope you have found as wonderful a place for your daughter.

    You probably already know this through your lawyer.. but you probably should set up a “trust” for her and also have the plan for who the conservators will be after you are gone… My parents had a plan .. but since I moved out of state we ended up making different choices… than they had originally wrote out.. the good thing in our instance was we all get along great and can make decisions with usually a unanimous consensus… it also helps that our oldest sibling is a retired lawyer… we leave most of those type of decisions to him!

    I do wish to tell you that your family is stronger than most and that even if you don’t realize it .. you were chosen to live this for a reason.

  33. Tara, it has been years since I read your blog, but was so glad that Cathy and then Tena shared the link to this post. I feel for you and your family and pray that McKenna and your entire family will be finding peace.

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