Away From The Oven Special Needs
Giving Up The Fix To Find & Focus On The Joy

I’ll be honest, it’s felt like quite a risk to step out of my kitchen and share a bit more of my personal life on this blog. I worry that people looking for cake pops will be all confused and upset about a post that doesn’t include buttercream. I worry about exposing so much of myself, my feelings and who I am, especially when it really isn’t sugar coated. Cake pops are safe to share, life and emotions, not so much.

That said, the emails and comments I have received from other readers and other bloggers (and even people I see in person but never share these thoughts with) have blown me away, and assured me that if only for a few people, sharing a bit more, a bit off topic and a bit of me is the right thing to do. I know for myself, and from many who have reached out to me through my posts, the journey as a special needs parent, at least out of the gate, is lonely, confusing and frightening. Finding a way to connect, a way to relate, even to someone you’ve never met, is like finding a life line. So I take the risk and put it out there.

As always I feel like I need to add the disclaimer that things could always be so much worse. I am so thankful for our blessings and how healthy our kids are. That never ever escapes me. But, I think anyone who finds themselves living a life different than they planned, has an adjustment period. You have to let go of what you expected, what you thought would happen, and find a way to your Plan B. Or Plan C. You have to dream new dreams. And that journey has been what the last year has been for me.

Acceptance has been hard. I’m not going to lie, even though that would sound better. Either I really suck at it, or I’m just not quick to sugar coat it and pretend as some might be, who knows. In day to day life I try to, I put on a smile and try and say it’s all “great”. But it’s not. It’s hard. Some days are dark and I’m consumed with fear and worry. It’s not that I don’t accept my darling daughter for who she is, it’s not that kind of acceptance. It’s accepting that you, mama bear, aren’t going to be able to “fix” this.  As you start the journey, you not only have to adjust to finding a new way for so many things, but so much of your life is about tests, evaluations, therapy, doctors, rating scales and constant reminders of the deficits. The focus is overwhelmingly on what is wrong. And you struggle with that inner voice that says no, I WILL fix this. I CAN fix this. I just have to do more, fight harder, look closer, do better. It’s letting go of, and accepting that, which is hard.

This week we spent four days at therapy, I spent five hours filling out questionnaires where most of the questions were about her skills and most of the answers were “no”, and then three hours being questioned, and having her evaluated, at the special needs preschool by a psychologist, speech pathologist and occupational therapist. Ultimately, those are all things that focus on the weaknesses. They focus on what she can’t do. They focus on what is “normal” for her age, and how she is so far behind that. Nobody focuses on the fact that she can say “orange” or the puzzle she can do, those little victories I try to cling to and share. The focus is on what she can’t do. They tell me where she fails, they tell me how far below “average” she is. I get it, I understand it, I know it is the path I have to push through to get her services she needs. But oh my hell, it’s not fun, and it beats you down.

There are also still the unanswered questions that loom at every doctor’s appointment, every eval, every questionnaire I fill out. What else is going on? We know she’s apraxic. We know she has sensory processing disorder. But is she also autistic? Is she also cognitively disabled?  I. DO. NOT. KNOW.   And I’ll be honest, that sucks. Once you know what you are dealing with, I think acceptance is easier to find. Okay. This is it. This is where we are and this is what we need to do. Stop testing and looking and wondering and mobilize. Let’s move forward and do this. Let’s find our support group, let’s find our tribe, the been there done that parents who can help guide you with wisdom and support. Let’s do what’s best. But when you don’t know, you still spend so much time, so much energy and so much emotion investigating. Wondering. Worrying. Looking. Evaluating. Not knowing.

To be painfully honest, a constant focus on what’s “wrong” and what’s “unknown” has pushed me down a pretty depressing path. I’m the type who sees a challenge and takes it on. There’s a mountain, I’ll climb it. It’ll be hard, but we’ll get to the other side and it’s downhill from there. But this isn’t that. This isn’t a short term issue you work REALLY hard at and fix. I can’t fix this. And that is a shift in mentality that I’m dealing with for the first time in my almost 40 years. No matter how hard I bust ass, now matter how much work I do, no matter how much I sacrifice, I can’t fix this for her.

Life has given my child some big challenges and I can not fix them. 

That is what I need to accept. For her. And for me.  And for our family. I’ve spent a year making my world about trying to fix this. Instead of play dates and parks it’s therapy and doctors. I’ve given up hobbies, I’ve given up a social life, I’ve neglected family and friends, I have poured every ounce of myself into finding the fix, the cure, the solution, finding how to make it better. I’ve always been the fixer in my family, heck, it’s probably why I became a therapist. I fix everyone’s problems. And I’ve spent every moment I can trying to fix this. The moments that are not devoted to that are devoted to my older daughter and work, and a tiny bit that might be left gets split between my house, my husband and myself. I’ve lost myself. After a year of trying to make that plan work, I’m realizing it’s not working. And it sucks. And it’s not healthy. For ANY of us. It’s time to find and focus on the joy.

There are still questions. There are still unknowns. There are still evaluations and tests and therapies and doctors. But the focus of our LIFE can’t be on that. The focus has to be on positive things. I don’t want to wake up one day and realized we missed her childhood by focusing on those things.  I want to focus on how stinking cute she is. I mean really – look at this kid…

I want to focus on her love of music. I want to focus on how darn silly she is and what a great sense of humor she has, even without words. I want to celebrate all of the things that she CAN do, the things that aren’t on the forms and check boxes and standardized tests. I want to bring back joy and lightness into this house. I want to find and take back fun. I  want to get out, and get a break from the challenges, even if only for an hour or two, so that I can come back refreshed and share that with my girls. A dear friend took me to the P!nk concert the other night (only one of my all time favorite artists – ever). I had barely 24 hours notice and “no” was not an answer to my friend, and honestly, that’s kind of the push I needed, because it’s really easy to isolate yourself and make your word very small. But wow, the difference a night out makes for a worn down mama. Fun, happiness, enjoyment and a break – those aren’t just good for me, they are good for everyone.

I want us all to have fun and to enjoy this precious life we have been given. I want my oldest to grow up and rejoice in her sister, which I know she does, but I also know that this has taken a toll on her, and I need to turn that around. I really believe special needs siblings are pretty darn special beings, probably some of the most amazing people on the planet.   She spends her days off from school sitting at her sister’s therapy center.   She often can’t do the things she wants to due to her sister’s schedule or needs.

It’s been a tough year. Circumstances have also been such that a lot of long term friends are no longer around and divorces in the family have seen many relatives say goodbye, she has seen her world shrink and it has left a void. But God bless this amazing kid of mine, as she continues to put her best foot forward and help her sister. I am so thankful for the handful of amazing people in her life who do so much to help us pick up the slack and make her feel special, spend time with her and do special things with her. I do not know what we would do without them, it has a huge and positive impact on her. But I also want life at home to be positive. I want her to see the joy and fun in her sister and not just all of the work and appointments and struggles.

So we now focus on finding the joy.   Celebrating the positive. Yes, obviously we still have to do everything we can to move mountains and get our girl every ounce of help we can to give her the best shot at becoming the best she can be, but we need to not miss how great and how perfect she is at this very moment. How wonderful life is, and how that wonder can not be measured on any test or evaluation. When it comes to finding joy and embracing all the sweetness, that is simply not going to be in the fail column. It will pass. With flying colors.  🙂