Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Monday, April 4, 2011

The "other" child

I have had this nagging feeling for the past couple of weeks that I am just not doing something "right" in regards to raising my beautiful daughter...
Yes, I have another child besides my son who I blog about all the time.
Case in point.

The other day I had put on my blue shirt, blue Autism Speaks ribbon pin and we were headed out to the door to get into the car.
My daughter looks at me with tears in her eyes and says, "What about me mommy?"
"When will I get a day for you to wear a shirt?"
And...heart drops...mouth crinkles into frown and I pick her up and give her the biggest bear hug I could.

I wanted so much to run back into the house, put on a personalized t shirt with her picture on it, with a pin that says "I LOVE MY DAUGHTER...TOO"
Ha, so sad...but sometimes I feel as if I need to yell that at the top of my lungs to the world...and obviously to her.

I am still figuring this whole deal out.
I still don't know how to balance having a son with Autism, and then this other perfectly special, intelligent little girl who has some tough questions.
She never asks too much though...she never complains when we have to leave the park after 5 minutes because her brother threw a tantrum and we had to leave...she never rolls her eyes or makes fun of him when he can't do what other kids can...she doesn't ask why he still needs help dressing himself when she can dress herself just fine...she just doesn't.

But she does want to know why he is so damn special...and sometimes she "isn't"....at least in her eyes.
She doesn't understand why there is a team of people who are at our house every single day to work with Kannon...to play with Kannon...to take notes on Kannon...to watch Kannon's every move...and why she doesn't have this "special" treatment.

Of course she doesn't feel as special.
Who would when you look at it logistically.
Kids look at things in black and white...there is very little in between for them.
That comes with age and influence.
I must start filling in her gray areas before time passes me by...as we all know it does go by fast.
Before we know it our babies aren't babies anymore...and we are left with regrets...at least some of us are.

I already have so many regrets...and I try every day to put them behind me and move forward.
I must set an example for her.
She needs to see what true acceptance is.
She needs to know that life is what you make of it...and no one can make you feel bad about yourself...only you can do that.

She needs to go beyond being the "normal" child in all of this.

I try to show her in my own way how different and special she is.
I try to take her out on mommy/daughter outings so that just the two of us can hang out and talk...go shopping...walk around holding hands laughing...just being around each other without the constant demands Autism places on our every day life.

I think she enjoys our special time together.
I also know that the minute we get home, she runs to wherever Kannon is and sits down next to him.
After all, he is her big brother...he should be someone she can run to in her life.
I can only hope someday this can manifest to truth...
For they both rely on one another in ways they don't know about or understand yet.
They only feel love.

I think once I stop over thinking this whole thing and just allow my children to figure things out in their own way, I may just learn how to deal with it all.
They both seem very comfortable in their love for one another, and nothing in this world can be a better life lesson than that.

I need to accept that I don't have the right answers sometimes...even when I think I may need them.
I need to relearn a new kind of patience that Autism previously took away from me...only because I allowed it to.
Everything in life is given to you for you to learn from...to find balance within.

Just because I have 2 kids doesn't mean they balance each other out in my life.
It should mean that I need to find the balance within each of them individually for the benefit of us all.
At least that is what I am going with for now.

Oh...I am also going to make a personalized pink and red t shirt with her favorite things all over it so I can wear it on our next girl day together...I think that's definitely in order :)



  1. I like the pink and red t-shirt idea!

  2. I love what you wrote, "They both seem very comfortable in their love for one another, and nothing in this world can be a better life lesson than that." -- Food for thought.

  3. I have the same problem. My daughter is 9 and my son is 3.5. I make sure my daughter is still able to take her dance lessons, Mixed Martial arts and competition dance even at the expense of me. My husband and I also take her on dates and one on one time. There are still melt downs but she is such a kind understanding soul. It is really hard to balance it all.

  4. Thank you for sharing! Beautiful!

  5. I have a nine year old daughter who feels forgotten in the midst of all our autism work. It takes a lot of work to make her feel as special. When I put on my Zion's Tribe shirt (for my seven year old with autism) my daughter asks where her shirt is? I tease her that I have a "I walk for my daughter with Lactose Intolerance" shirt. She giggles.

    And even though we try to balance our time with Girl Scouts and piano lessons, her feelings are always at the fore front of our mind. What do we do to make her feel as special as our son? It is a hard line to tow. She will start counseling soon and she is also going to some SIB Shops, for siblings of those with special needs.

    I read a article recently that I thought was really awesome. Here is the link. And good luck. We are all going through these same questions and I appreciate you sharing!


  6. Oh my gosh. I'm sitting here at work crying. I've never ever resented my brother. Growing up, I never was upset that he got more attention. It's not until NOW -- when I'm 28 and he's 21 -- that I'm like, "I miss my mom." He doesn't like it when she's on the phone, and lately, she can't leave without him throwing a tantrum, so our monthly (I visit my parents monthly, I live out of state) shopping trips (it's how we bond) have ceased. I miss her.

  7. As a sister with a brother with Autism, my mom faced the same problems. There was a lot of times I felt like I wasn't special and I didn't understand it. However, like you my mom was there for me and even when she didn't think she was paying that much attention to me, she didn't realize that those were the times I remember the most. Sometimes I look back and wonder if she spent TOO much time with me and not enough with my brother because that is the memories that stick with me the most. So don't worry. Just keep up what you are doing and when she looks back years from now she'll remember the love and what a wonderful mom she has.

  8. I have the same sibling set, older son (with Asperger's) and younger daughter. I sometimes have the same fears. So far we haven't had a tee-shirt moment, but we have food discussions. "Mommy, why does Tristan get to eat a granola bar, and I don't get one." I explain that it is because Tristan is on medication that makes him especially hungry, and she is not, and she does not need a granola bar right now. I still have that nagging mommy guilt even though I know that I am doing the right thing for both of my kids. We will always wonder, but I'm sure you are, like I am, doing the best you can.:)Your post brought tears to my eyes, just in recognizing another mother with the same struggles I face, and feeling...less alone.

  9. Oh, I very much know these feelings and worries and guilt and the sinking feeling in my gut when I realize I've had a day when 90% of my energies towards my children go towards my son on the spectrum while my daughter...well, she doesn't NEED so much of me. And yet she DOES, just doesn't make her needs known in the same ways.

    I've written a lot about my son--to his teachers, for myself--working things out in my mind all the time, sometimes mentally present with him even while I'm physically present with my daughter. My son is nearly 7, my daughter nearly 4 (their birthdays exactly one week apart), and I am trying to be more conscious of my daughter's need to have her story told, her life shared too, every bit as much as her brother. It started with a poem (http://thinkingautismguide.blogspot.com/2011/04/purple-sucker.html) and will continue. Somehow I must make that connection continue.

    Thank you for this post. For reminding me to seek balance.

  10. Wow! That made me cry!! My autistic boy, is my grandson and his sisters were on either side of him, age wise. I raised them for quite a few years because of alcoholic parents. They never once complained of all the times our outings "anywhere" got bumped or shortened because of their brother's inability to cope at that moment in time. I am going to send them both a copy of your post to let them know how wonderful and special they were during those difficult years. Thank you for sharing that. You have touched my heart.♥

  11. Wow, this hits home for me. I have one boy with Asperger's syndrome and one boy without problems. I find it hard to balance things out too. I have not had a T-Shirt problem, but then again, my youngest is 5 years old and it is the 10 year old with the Asperger's. I do talk to him and give him a lot of hugs and kisses and listen to him read to me. I have found that getting my oldest into Martial Arts since he is able to talk and function, it helped a whole lot with the meltdowns. I think since he also has Sensory Integration Disorder on top of it, it gives him the movement he needs to focus his mind a little more. It is however taking him a longer time then most to climb the ranks. Snack time does get a little hairy when my older boy gets more then my younger and all. It is all in what they both need. Anyhow, I wish everyone with special needs kids the best!

  12. I have 3 1/2 year old twins, my daughter is autistic, my son is not. Its very hard to balance them both. Ava needs a lot of attention, and as you said she gets a lot of attention. There are people at our house everyday to work with her and special programs we attend... all for her. Sometimes Ernie gets very jealous of all that attention but he's only 3, I try my best to explain it to him but I don't know if he always understands. He LOVES his sister and is very protective and considerate of her, he's never mean to her (although they do get into their normal riffs fighting over toys and such) but I realize more and more each day that I need to pay more "personalized" attention to him because I don't want him to feel like he's #2. I don't get to spend alone time with him... but I realize I do need to make that change. Thanks for sharing! I feel better knowing I'm not the only one struggling with the same issues =)

  13. Thank you. I have 3, two boys and a girl. I am married but may as well be single. My 7 yr old boy has been diagnosed Autism, my 11 yr old son has a lot of issues also. My daughter at present seems to be quite normal. It is hard to balance it all some days. I am thankful my 11 yr old is understanding in some things but even so I feel guilty as a mom sometimes, thank you for letting me know I am not alone in this worry.

  14. I know exactly what you are going through. I have one son on Spectrum, I have one Daughter on Spectrum. My youngest Daughter says that same thing to me she would like awareness shirt. My only thing is that I have one other child as well. My two oldest have AS and my two youngest or non- As.. My two youngest requires less care then my two older two do. My 5 1/2 year wants to know why she dose not get a month that lets people know about kids that are normal. Like the have for her siblings with As??? I really don't know what to say..

  15. I have 2 children also and have run into the same problem. My son(autistic) 3.5 and my daughter(typical development) 5. My daughter wants the SLP, OT apts and special attention my son gets. She loves him very much and she really doesn't see him as any different then the boys in her class. In fact she says she likes her brother more then them lol. I have been searching for ways to explain why my son has special exceptions made for him and special apts every week. I have gotten a lot of children's books, esp since my daughter loves books, about autism and she has really fallen in love with "my brother Charlie". My husband and I always make sure to have special time with her and she is allowed to help me more then most kids her age (which she loves) because I am newly physically handicapped. The fact that you are seeking balance for both of them will make itself more apparent in the future and she will know that you really do love her just as much as her brother.

  16. I am so glad Im not alone on this subject. I have four daughters and my 5 year old is on the spectrum. I always regret not being able to do more with the other ones and since Im a sinlge mom now it seems as if all my time and energy goes into making "cyndi" happy and the others arent as accepting as they used to be. Im just hoping to find some type of balance..

  17. I have the same thing too. Older child with autism and younger NT child.

    He never questions why his big brother gets to go out with his therapist to fun places, he hardly ever complains about any of it. He's such a sweet, caring little boy.

    I've felt SO bad for him because he's taken the brunt of a lot of my son's aggression. He's got the scars to prove it. He forgives him so fast and wants to play with him again. He's got such a fantastic heart.

    I try my hardest to make him feel special. We get a lot of alone time together and we go out and do fun stuff. He gets to eat all the food that isn't allowed in our home. He never brags about it...or talks about it. I think he knows it's our special time alone.

  18. I too have this same problem, I have three boys, two on the spectrum, makes things interesting and difficult at the same time, thanks for writing this helps to know I am not alone.

  19. I have issues with my neurotypical daughter as well. My two boys take up so much of my time that I break promises with my daughter. She's since grown accustomed to it, but it breaks my heart that she has to make sacrifices. It's very hard to balance sometimes. I'm working on making a greater effort for Mommy/Daughter time. No boys allowed!

  20. This touched my heart, and it really made my feelings for my daughter come out...she is the second child and loves her brother and as much as I try to balance it out over the years there are times that I wonder if I am doing a good enough job for them both. Thanks for sharing this! Blessings to your family!

  21. Just make sure they don't feel alone. My brother is younger and has autism, he's turning 18 this year, but when he was first diagnosed 15 years ago, all my parents time was spend getting a diognosis and then finding a way to lessen the symptoms. Well as much as they tried, I was mostly alone. It wasn't because they didn't take me to soccer practice or on outing just us. It was once we got home the attention was back on him. I was getting strait As in school and doing well in sports but was never recognized the way my brother was when he accomplished things that a six-eight year old thinks are
    trivial. What I wanted, was everyone in the same room, even my brother who I
    love, and pay attention to us both and sometimes more to me, because I knew that he was getting it all when I was gone but it somehow didn't work the other way. Those dates with your kid are awesome, but if that's the
    majority of the attention they get, it's like a secret relationship and it feels
    tainted. I can tell you that's how it feels almost 20 years later. I don't mean to be cynical. But you are mostly mothers who aren't sure how to handle the situation. It helps to know the other side and to see how it can go wrong. And just because your other child doesn't ask for the attention doesn't mean they don't want or need it. From my expirience, it's because you feel guilty asking, we're alot more aware of what's going on that you'd think, and it just hurts you years later when you realize that you should have.
    In the words of my awesome brother, "well, there goes normal"

  22. I think this is something that so many families can relate to. We posted a link to this entry on our blog so we can share it with our network. Thank you for being so honest about such a tough issue. :)

    Irvine, CA

  23. Kary i make personalized clothing for kids and adults and i would be happy to make you and your little girl matching shirts if you would like for Free!!!! just send me a message on facebook at http://www.facebook.com/KarleesKloset

  24. I feel you on this, eventually age and time will make it easier if you fill in the grey areas for your daughter. It is tough when they are small. My son is hf on the spectrum and 14, my daughter is awesome and 13. She is his strongest advocate, super defender and annoying sister. She will not tolerate anyone to mistreat her brother and has gotten into one or two fights at school because someone mocked him. But she still treats him as an equal partner in crime. I love the bond they have and it seems to grow as they get older. They drive each other crazy sometimes as any pair of typical teenagers would. I love the way that my daughter sees her brother as her brother and couldn't imagine him any other way. I would like to take credit for her open mindedness but I cant. She is phenomenal with her brother. It gives me piece of mind to know that when the day comes that I am no longer here to care for my son, his sister has got his back!

  25. You should also look up and purchase a book titled "my brother, autism, and me"

    it's very simple, yet poignant. i purchased it at an autism walk a few years ago for my daughter to help explain as to why her older brother sees the world in a different way and needs some extra help and understanding.

  26. My oldest son has autism and then I had two more children. That was the best thing I could have done for us, for him and for them. They are now 25, 23 and 19 years old and I just wrote a blog article with many of the same topics you cover here. I hope you'll read it and I hope that my perspective gives you and other readers some ideas that will be helpful. There are some good tips for parents in some of the other articles too so check them out while you're there. Also your whole family might like the t-shirts that our son Eytan designed with messages that the whole family can relate to. http://www.eytanart.com/autism-awareness-effect-on-families/

  27. So beautiful, honest, pure and moving! Thank you for writing this!