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.  :)

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Comments

  1. Melinda Hall says

    Who would have thought! I would never have dremaed to have signed on today to see you live a life a lot like mine. I have a 12 yr. old who is ADHD, depression and I have fought for yrs. to have diagnosed Asperger’s but I will take PDD-NOS that we just got in Nov.. I hae a 4 yr. old daughter who is just now starting to speak quite a bit nd most you still can’t understand, meltsdown all the time, flaps, has sensory issues, needs therapies and so on and was diagnosed PDD-NOS the week b4 her brother but I know there is more to the story there as well. I am constantly searching, wanting to fix as well and understand to a tee the uncertainty of what else or to what extent is wrong. Reading your story won’t bring back my joy completely but it gave me inspiration to brig back the joy this weekend. I also have a 3 yr. old daughter as well and my husband is bipolar. My plate is full but honestly I wouldn’t know how to live without it. You def. are not alone and I feel your roller coaster of emotions. Keep doing what you are doing because she has the best person on this earth in her corner.

  2. Suzanne says

    Thank you for posting this amazing set of words. As a mother of a child with autism , I can relate to every single word. After coming out of the trip to Denial, I focused on the positives , small victories and joy that my son brings. His milestones and achievements will always be different from his brothers, and that’s ok. He will always need something more but he always gives more in return.

    Your story ,your baking and creativity inspire us all.

  3. Joey Sewell says

    This is great. You have expressed many of the same emotions as I have felt over the years. I learned a long time ago to go on my gut, not to listen to everything doctors or therapists have said. I was told 11yrs ago that my son would never walk, never talk, and never function on his own. I took him back to the doctor that told me that when he started talking, he told me well he will never walk or function in his own. I took him back when he started walking and the same doctor told me well he will still never function on his own. I told him that I would see him in 18yrs so he could see that my son would function in his own. And I completely agree that it is a long and lonely road, but it is a road that I am thankful for because it has shown me a lot about how strong I am and how lucky I am to have such an amazing son. And I have to say that I also focus on what my son can do. He can do a lot for a child with his kind of disabilities, in fact there are says I am in awe if what he does. You sound like a great mother and you daughter is adorable. Thank you for writing this post because sometimes it is nice to be reminded that I am not the only parent out there facing these kinds of struggles

  4. Sylvia says

    Thank you for this. I am in a similar boat and was feeling fed up with no answers. I have been trying to find the silver lining. Reading your words gave me another side of the coin to look at. Thank you!

  5. Angelina says

    Bless you and your children. Several years ago I had a child with a physical birth defect. Different issues but same worries. I wish you lots of luck.

  6. LeeAnna Archer says

    I am the 42 year old mother of a 2 1/2 year old. He was about a month pre-mature so I’ve chalked alot up to delay. But I’m concerned now that he is almost 3 and still not saying many clear words, bangs his head out of frustration from his lack of communication. I actually happened upon your site from Pinterest because the baking title. See. I’m an executive pastry chef just recently returning to full time work. I haven’t been able to have a ton of test since my husband lost his job AFTER we had our son and AFTER my decision to be a stay at home mom. Life is fun huh?! We had him evaluated just after one and he just missed the criteria for help. Your daughter, who is adorable by the way, seem lively and interactive as is mine so that is why I’m wondering more about the daily “symptoms” and difficulties that make up a child having this condition? As a new mom of this only child I have absolutely NOTHING to go by as “normal”. Any way you, or anyone, can direct me would be appreciated. I unfortunately am an island mom died when I was 13, my mother-in-law who I love dearly is often babysat by us. Only brothers and well they’re men. My husband is amazing but just as clueless as I am about it all. Help!

  7. says

    The part about your older daughter really struck home with me. Growing up with a disability, I know my sister really suffered from the amount of time and attention my parents had to give to me. And to this day, (even though we’re 24 and 25), it can still be hard for her that when we’re together, she’s forced into a bit of a caretaker role. It’s nice to see how dedicated you are to making sure B gets to be more than that in her family. :-)

  8. Chelsea says

    Hi, I’m a fairly new reader and all I can say is wow! How brave are you for sharing something so private as part of your healing process! I also think it’s amazing you chose to put focus on the positive. You’re right, your daughter is absolutely beautiful and she is her own little person. Good for you for accepting her for who she is and understanding all that encompasses. I wish you the best of luck on your journey & know if you need a break from the sugar high, were here for ya!

    Best wishes. :)

  9. Mirtha says

    I can’t even begin to imagine what you overcome every day. However, I am a mom and I can understand wanting the best for our children. I applaud you, because so many other moms would have given up along the way. I wish you the best, I hope that you are able to get answers and find solutions. I hope that other friends and relatives step in to give you a couple of hours here and there, for yourself and for your husband – you can’t neglect that relationship either. And for your other daughter, I can only say she’s amazing. I send you a huge internet hug.

  10. Sandi O says

    Christi, you know I think the world of you and this gives me just one more reason to do so! You are so right – for your sake, and that of your family, find your joy and give yourself a break. You deserve it and it will make you a better, happier Mom and INDIVIDUAL! Your girls are so lucky to have you, and you are lucky to have them. Hugs!!

  11. TiAnn says

    Thank you for this beautiful honest post. Though my struggles are different, your words have helped me to see where I need to refocus my priorities for my little girls and their needs. Thank you, & I wish you the joy you seek.

  12. Mary says

    Bless your heart for having the courage to share your story. I can only imagine how much you will help other families. I have worked for years with special needs children and I have seen how hard it is for those families. All I can say is that, all the children I have the priviledge of working with over the years will always be in my heart. They brought so much fun and love to my life! They were all so special. I wish you and your family all the best in your journey!!!

  13. Mary says

    She is absolutely stinking cute! I am 17 years on the journey and about to apply for guardianship for my autistic son. Hang on to that Mama Bear mode – you may not be able to ‘fix it’ but you will be her voice and advocate for the things she needs, and by so doing you’ll teach both your beautiful daughters a thing or two about determination, commitment, trust, belief and the profound beauty of unconditional love. Enjoy every minute of their childhood – they grow too darn fast!! Bless you and your lovely family!

  14. says

    you are so right, it is hard to share, and I find that people on focus on the wrong of things, she is doing so many things right, as are you as her mom and her sibling is doing great too. Keep it up, I don’t think I would be able to do it, I think you are a very strong person:)

  15. says

    I love this! She’s a doll! Acceptance and moving forward is sometimes the first step to healing and finding joy in the day. I can relate to some of this, as we have had struggles with our oldest through the years. Those days when you spend exhausting amounts of time trying to do everything within your power to help your child, only to met with the realization you are helpless is the worst feeling any I have ever had to endure as a mom. But, the next day, you find joy in the little things, and that keeps us going. This post is just beautiful!
    Stopped by from Shell’s place.

  16. says

    Thank you for your honesty. I too have had a hard time accepting. I’d like to be able to fix anything that’s hard for my kids- and yet there’s so much I can’t fix. I still love my boys with all my heart and don’t think it’s a bad thing to spend some time dealing with acceptance.

    But yes- it’s so important to find the joy. Because there is so much of it!

  17. Michelle says

    Thank you :). I also have a lot a trouble adjusting to not knowing the answers, not being able to fix my daughters health problems. And while everyone is simply telling me ‘to let go’, my mothers instincts are not letting go so easily. I loved reading youre story and it has truly helped me to see things in a different way. All the best to you and your family!!

  18. Jennifer Rain says

    Who would have thought stumbling across your blog would be such a great birthday gift this morning. I too share many of your feelings momma. My special and challanging one is almost 11. We have spent countless hours as well with specialists, therapistist, etc. its been a long road and it frustrating to know something is not quite right but no one had the answers for so long…we still dont have 100% diagnosis but I’ll take what I do have and run with it for now. It takes a lot out of you and sometimes you just want to scream…sometimes I do for my own sanity ;) like my girlfriend says,” If God only gives you what He thinks you can handle He must think I’m a bad ass!” so true! We started to see the differences when she was about 4. As of right now we have an official diagnosis of ADD, processing disorder and she hits the markers for high processing Aspergers. We have had many break thoroughs, she can skip and swing and ride a bike now and set backs as well…mostly social. You are not alone even though it feels like it sometimes. Thank you for sharing your story, it really helps to hear I’m not the only one going on this journey too :) keep in touch if you like, this momma bear understands.

    • says

      Jennifer, thank you so much for sharing – I can’t tell you how much it means. I’ve heard quite a few people mention that about age 4, and some days I cling to that hope, because some days I worry that she’s going to grow up, but in a way remain a toddler forever, and that’s so hard. That not knowing, not having the end all be all answer SUCKS. It’s like if we could fit in a box, find the right check mark on the list, maybe it would be easier, but maybe not, but it’s hard to not let go of that. Thank you again for your kind words and sharing. I feel like so many of us keep these issues in the dark, and it’s a long and lonely road as it is, we need to find each other and create support. Hugs. XOXOXO

  19. Nancy says

    Your going to find this hard to believe but I am on your same path. Apraxia/Dyspraxia, and Sensory Integration Disorder are no joke. My story with my son sounds just like yours with your daughter. Every moment is a learning moment because it has to be. Every morning I find myself struck with all of the emotions of “I can’t believe my son has all of these challenges.” It seriously hurts my heart. So, I want you to know, I get it. Best wishes and prayers go out to you and your family.

  20. Gloria says

    You are so right. It is not a mountain w/a downhill side – it is a roller-coaster, some days with no station in sight. I was glad to see you name the need for ‘balance’… and to read your statement that acceptance is also about accepting what we parents can and cannot do. As the mom of a 16 yo w/”resolved” cas, global dyspraxia, and gifted w/learning differences, I decided a long time ago – when we rounded the bend from apraxia and medical issues (st, ot, pt, immunodeficiency, RAD to atypical asthma) and moved into learning issues and language therapy – this was as much about my growth as his. And now (add severe allergies, higher language processing, and executive function to the list), I know I was right. I know how to advocate. I know how to define and explain the educational/classroom ramifications of apraxia/dyspraxia to a teacher in 5 minutes or less! I know who my true friends are. I know the loss of a dream doesn’t mean life is over; it just means I’m changing again. I know that grief and grieving come with every “diagnosis”, and I know how to ask for what I need. (For awhile, I only knew how to ask for what my child needed!) I still have dark days, and I know I can ‘just do nothing’ on those days if I choose. I don’t think I’ll ever stop worrying, but thanks to an ever-growing international army of moms (God bless the internet and Sharon Gretz), I’m not alone anymore. I’m SO GLAD you wrote this and shared it in the A-K group. The journey is hard as hell sometimes. The payoff is I now have this incredible relationship with my 16 yo son, one that I am certain most mothers do not have. We are a team. And I’m so proud of him. And to tell the truth, I’m proud of me too.

  21. says

    Christi, I know you posted this awhile ago, but I just stumbled upon it today . . . I am awe struck by your strength. And also by how much I can relate to different things you wrote. Our situations are very very different, but I certainly know that feeling of “This was not how I had things planned.” And I know all about grieving not just the issue at hand, but also the loss of the plan you had. My son passed away a week after he was born, and for probably a year after he died I didn’t just grieve him, I grieved this sense of: “This is not how I want my story to go. This is not the story I wanted for our family.” It sucks.
    I can also relate to the fear of blogging about things that aren’t pretty. So, thank you so much for doing it. Thank you. I know that Pinterest likes sugar, but I like real bloggers. So thank you.

    • says

      Lisa, thank you so much for your kind and thoughtful comment. I am so sorry about your son, I can’t even imagine being in your shoes and how you wrap your head around that and move forward. It’s so hard to be open and honest on here, because reality is people come here for cupcakes, not for the nitty gritty of life. But I also feel like if we have the forum available to share, to connect and to let others know that they are not alone in their emotions, their journeys, their struggles and their triumphs, we should use them. These paths can be lonely ones at times and it’s like finding a light when you come across someone else who “gets it”. And that has made it worth taking the risk of sharing more. :) Hugs.

  22. says

    I am blown away by this post. I think I could have wrote it word for word. Heck, I think it’s my life. My son is 3 and has no words. He has not been diagnosed with Apraxia yet but I know it’s coming. Every day is a roller coaster of emotions for me. I struggle between anger and sadness and fear and jealousy. The ‘can’ts weigh me down.’ I need to find the joy. Cooper is sweet and cute and loving but I am just so lost in all of this. So, what I am trying to say is, I know how you feel mama. Exactly. I wish you strength and hope and everything you need to get through this. Good luck.

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