Special Needs Parenting – Some Days.

Special Needs & ApraxiaThere are days that are good.  There are days that are bad.  And there are some days that are hard.    Today is hard.   I always feel like I need to immediately add a disclaimer – it could be so much worse.  I’ve watched friend’s lose spouses at young ages, children go through cancer, terrible awful soul breaking devastation.   I’m always aware of how blessed we are, and I am so thankful for that every day and am so aware at how much harder so many have it.

But still, some days are hard.

Apraxia.  A little over a year ago, the word had never crossed my path.   Now it consumes my days, my nights, my thoughts, my world.  The condition that keeps my sweet little girl from talking to us, from telling us anything, from even signing, pointing or waving, no matter how hard she tries.   And she tries.  All day, every day.   It’s not about some days for her, it’s every day.

Severe ApraxiaThere are some days when you are tired, running on empty, working so hard, and your daughter’s therapist comments about how she’s never seen a child who has had their limbs so impacted by apraxia that simply pointing or waving is such a tremendous struggle.   It’s not that I’m unaware of that struggle, I watch her little hands contort and reach and twist to try and do something so simple as reach out to pick Cheerios or Goldfish for a snack.    But some days you just wish that you’d hear the positive comment, something hopeful, or at least not be reminded that on the scale, the spectrum, whatever, you are without a doubt hanging out on the “profound” end.

My G

These are some days when work piles up, things need to get done, calls need to be returned, deadlines are missed, emails need replies, proposals and contracts are waiting go be reviewed, but you sit in a state of what feels like reoccurring long term shock, wondering where you find the energy to get through the things that seem mundane when the things that are so important take every ounce of you.   When you feel like you spend every moment of the day playing a game of charades that never ends, trying to be a psychic, trying to predict, trying to understand what this little soul is trying to tell you.  Trying to be an interpreter to a language without words or signs, and it emotionally exhausts you on a level you didn’t know existed.   But you realize you have to find the strength and energy to snap out of it and pull it together for your children, especially knowing that while so much energy was spent with one child all day, another comes home from school and deserves every bit as much from you.

Occupational TherapyEvery day for us is therapy, therapy isn’t in the some days column.  Speech therapy, occupational therapy, therapy homework, flash cards, augmentative communication apps and tremendous frustration.    Life become therapy.  Yesterday it took me over thirty very frustrating minutes to figure out what G was so upset about.   She was upset, I was running out of patience, until finally she found a jacket and handed it to me with her big beautiful eyes pleading to put it on her.  She was cold.  Over thirty hard minutes to express to her mother, the person who is with her all day, every day, who knows her like nobody else, that she was cold.  Something so simple was such a struggle, for both of us.

It’s some days like that where I feel like we are standing at the bottom of a mountain, and I don’t know how we’ll ever climb it.   It’s moments like those that I almost lose my breath at the thought of her going to preschool or school, and not being able to to tell people anything and to not be able to tell me how her day was or if something bad happened.   Terrible things could happen, and she has no ability to voice them.   It hits a nerve at the base of the maternal instinct to keep our kids safe.

Living with apraxiaWill she ever say “hello”?   Will she ever say “I’m hungry”?   Will she say “my tummy hurts”?    Basic things that get you through the day and meet simple fundamental needs.    My mind swirls these thoughts constantly.     I work to chase out the questions like “will she ever be able to sing the songs she hums?” “will she ever have a best friend?” “will she ever talk on the phone?” “will she ever tell us what she wants for her birthday?” “who will sit with her in the school cafeteria?” “will she ever go on a date”…  ultimately at the core wondering “will she ever have any sort of a ‘normal’ life?”.

I tell myself that at least she can somewhat communicate through an iPad.   But then some days I think about what kids are like, and wonder who, if anyone, will befriend the little girl who has to talk to them through an iPad.   Kids can be so mean.  I hope that my teeny tiny little girl can make a friend, or two, but even more than that I pray doesn’t grow up experiencing daily ridicule, rejection and bullying, and I wonder if we will have to home school her to protect her from that.   I tell myself to worry about today, don’t think about tomorrow. But short of a lobotomy, those thoughts don’t disappear, they just simmer under the surface.   How do you not wonder about the future when it holds so many unknowns.

Special Needs Parenting.  Some Days.It’s hard some days to not spend every moment possible researching.  Is there something else we could do?  Something we could change in her diet?  A new form of therapy somewhere we could seek out.  The thoughts never shut off, it’s just a matter of trying to turn down their volume.    Friends, who you have no doubt really do mean well, suggest really obvious things and some days it makes you want to laugh.  Or cry.   “Have you tried sign language?”   No we’ve spent thousands of dollars and hours in therapy, seen countless specialists, had inpatient hospital testing, genetic testing with insane price tags, brain scans… and never thought of the baby sign language that every toddler on earth knows these days.  My sarcastic side is hard to keep at bay some days, as I remind myself they mean well, while trying not to feel insulted that they think we’ve missed something so simple.  As most special needs parents, the reality is you know more about your child’s condition than most professionals ever will.  You’ve given up more nights than you can ever count researching and reading until you can no longer see straight.  You know more than you wish you did.

Verbal ApraxiaShe’s a smart little girl.  But it’s trapped inside of her.  Only a few, who take the time to really look, learn and listen with something other than their ears, can really see it.  Some days where I wonder if it would be better for her to not be smart.  To maybe be more unaware.  To not be trapped inside herself, unable to express her thoughts and feelings.    I think of how hard it is for my oldest to even wait her turn to express her opinion or share something – looking like she’s going to burst, unable to even sit still…  and then I look at my youngest and realize that place is where she lives, but I do not know when her turn will come.

SistersIt’s easy to sit and wonder why her?  Why us?  What is the cause?  And of course, how do we “fix” this?  At the same time, this child is a gift beyond measure.  Truly.  A gift through the miracle of adoption.  The smoothest, simplest adoption you could ever imagine.  With the most wonderful birth parents, people who we fell in love with the moment we met them.   An adoption that happened so much more quickly and easily then any potential adoptive parent even dares to dream.  I was with this sweet girl the moment she entered the world.  I cut her cord.  I held her immediately.   That is a miracle that to this day still leaves me in awe.  And that miracle has a reason.  This journey has a reason.  This was meant to be.  She is beautiful glowing ray of sunshine, and she was not given to us on accident.  And I hold on tight to that thought.

Adoption

And then some days I eat a cinnamon roll for lunch and try not to feel guilty about it as I finish up my pity party of one.  And some days I look onward and upward, and have faith that some day, some how, some way, we will be looking back on this and it will all make sense.  Some day.

Some Day.

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Comments

  1. says

    I have a special needs child that has a genetic brain disease. Up until September she could walk, and talk and dance and sing. Now she is in a wheelchair, unable to walk and talk or even swallow. She is feed by a machine. She can’t communicate with me. She tries so hard. I cry every night and I share her story going that someone or some Dr. will tell me something that could help me. My daughter that is only 4 years old has a terminal disease called leukodystrophy and that even though every day is hard you have to be there door your child. You’re doing a great job. Thank you for sharing.

  2. says

    Virtual hug! She has you and right now that’s all she needs. Although I know it’s hard not to think about her future. My 5 year old had a heart transplant when she was 8 months old. How can you not wonder what life holds for them. Thanks for sharing.

  3. Laverne says

    big hugz… its tough but you are not alone.. I like that part where you said some day it will make sense :) I hang on to that thought every day…

  4. says

    I completely understand how you feel. Why does life have to be so unfair? I’m so sorry for what you and your daughter are going through. I have a 7 year old who has high functioning autism, and have lived the therapy lifestyle since he was 18 months old. He didn’t start taking until age 3. Luckily for him, he does speak now, but we deal with a multitude of other issues on a daily basis. Hugs to you and your daughter.

  5. says

    This is just so beautiful. Courageous to share you struggles when I personally know exactly how hard it is. While from the standpoint of a younger sister not a mother, I struggle as much as you do. This is just an amazing post. One day she’ll read it and it’ll be a constant reminder of how much you love her.

  6. says

    Thank you for showing us your beautiful little girl, she’s precious! I see her smile and I know without a word she loves you with her whole heart. She might not be able to say it in words, but she tells you in the way she is, dont forget that. Its just a hurdle, not a wall, and one day you’ll jump over it and face the next hurdle, without them, you dont learn to grow and become stronger. Hugs from the UK. x

  7. says

    I live a similar situation within my family…we tend to show through our pages that our life is always sweet and colorful but we all know sometimes life is just unfair…still we have to take the good and the bad things and do our best…you do it great, I’m sure. Thanks for sharing. Big hugs.

  8. says

    I am sending you a virtual hug and a thank you. Thank you because a mother’s love is unconditional. No matter how or what we are doing we always have time to listen and understand our children. I know it’s hard having all those therapies, all the doctors visits and the extras. I love the way you talk about Apraxia openly. That’s the way it all should be. The more we vent out our emotions and feelings the more help we get. Don’t give up there is something that can be done I don’t know when it’s going to happens but soon I hope. Thank you Christy I am sure your little girl tries to say “I love you Mommy” from the bottom of her heart. When that they comes oh god it will be the happiest.

    • says

      Ladies, you are all so kind and supportive, and your words mean so much more than you’ll ever know. It was a really big decision to decide to share more of the personal side of life here, and I still feel like it’s a risky move to make, but one of my resolutions this year is to just “go and do” versus “wonder, consider and wait”. I think it provides the opportunity for people to connect, support and learn from and with each other, and I feel like that is worth the risk. Thank you all, you are all awesome. I wish I could sit down and share some cupcake with all of you. :)

  9. says

    I love how you insert the occasional personal post among the cooking posts. I really admire your honesty in sharing your family struggles and your determination to overcome them. I wish I had some magical words of wisdom to make your life easier, but I”m afraid I don’t. All I can say is – just keep loving your child and believe that your future will be brighter. Best wishes:)

  10. says

    I feel for you so much, I wish I could do something to help you with your struggle. Your little girl is lucky to have such a dedicated, loving mother.

  11. Pam says

    You are the epitome of motherhood- entirely vulnerable and perfectly courageous. Love your precious daughter and be loved. And enjoy the occasional cupcake, cinnamon roll, extra frosting brownie….

  12. Becky says

    What a profound post. My daughter had a special need child in her class that could not talk either and was trying to learn sign. They loved him like I could not have ever even foreseen. They totally excepted him and looked out for him. Every last child in her class looked out for him!!!!!! I know kids can be mean. They can also really surprise you.

    • says

      Becky – ah, your post so warms my heart. I always feel like if you just have a few kids “step up”, others often will follow. My older daughter’s school has a self contained special needs program, and my daughter befriended one of the girls in her grade that she met while they worked on the 3rd grade play. She came home and told me that she would want kids to befriend her sister, so she felt it was important and she really liked the girl. Every single morning when I drop her off at school, I see her go up to this other girl and say hello and they both exchange great big smiles. For every moment I worry about how the stress and challenges we face affect my older daughter, I am wowed by the compassion and empathy they have helped developed in her. You help give me faith that there are other kiddos out there who do surprise you. I can’t even imagine how that little girl and her parents have felt with such wonderful acceptance. Thank you so much for sharing!

  13. karen says

    From your blog I looked up the link on apraxia. I find it incredibly fascinating. By that I mean all of the effort and mind and muscle control it takes to speak. I believe that through some miracle of science she will speak in the near future. The concern you have about kids in school treating her different is legitimate but kids and parents now a days are use to seeing so many “different” people that “different” has become the norm. Kids are so curious and excepting. Once they learn about apraxia they will say ” ok” and move past it. My son has a processing disorder and once his classmates found out what it was they said “ok”. Kids in this generation are so different from any other. They have seen it all. If they were brought up right you and your daughter will have nothing to worry about. I wish I lived near you so I could help with everything!

  14. ChristiE says

    I first would like to thank you ! I have two children with special needs. It is so hard to not give up. I cry at night and feel that there is no hope. Then I open your blog and your words give me the hope and faith that I need to get through the day. THANK YOU !!!L!L

  15. Liza says

    You’re a mother like all the others who in a bad day you just need a moment to step back and embrace your pain and fears. Just let it happen and go on. It will only makes you stronger!!

  16. Joanne says

    Hugs! Hugs! Hugs! I too have a child with apraxia. He has verbal apraxia, diagnosed at 16 months old, now 6 years old and speech therapy is still our daily life. I can totally relate to all you wrote. I’ve spent countless nights/days researching, crying, wondering why and how we are going to pay for all this. I had such doubt he’d ever be able to talk or that I’d ever hear “I love you mommy”. I want you to know that there is HOPE! I finally heard those words and it was the best 4 words you can ever imagine hearing. It’s been a long road and we still continue down that road with many struggles but I just want you to know there is light at the end of the tunnel. They are our precious little angels and we have them for a reason. Keep up the good work with your little angel!!

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