Of all the posts I write each year, this one is always the hardest. I stare at the screen and memories flood back. The emotion rolls up my spine and across my heart as a lump forms in my throat. It doesn’t take long for the familiar questions to rush past my lips.
Why her? Was it something I ate while I was pregnant? Was it something that happened during delivery? What did I do so terribly wrong that my wonderful, loving God would choose to punish my child?
Why? What? How?
When will this end? Will it end? Will she have a normal life? Will she ever have friends? Will she ever know that she doesn’t have friends?
I cannot explain the overwhelming emotion that I feel even now as my husband reaches over to cup my knee, reassuring me although he does not completely understand my pain.
But if you are the mother of a child living with an Autism diagnosis… you know.
Why is it that this pain – even seven years later – is as fresh as the morning dew? I think primarily the pain lingers because of the lack of awareness in the world regarding children with Autism. The word carries such a negative stigma, a great mystery that people would choose to just ignore than try to understand. But as the number of children diagnosed with an Autism Spectrum Disorder rises each year, there has to come a time when someone pays attention.
Until then, YOU can make a difference. Yes, YOU… the person who is reading this and doesn’t personally have a child with ASD or Aspergers but you know someone who does.
Can I share with you one of the biggest pieces of my pain?
This day, World Autism Awareness Day, is incredibly difficult for me because not only does it remind me of the struggle that brought us to a diagnosis or the shock of actually placing a label on my child… No. This day is a marker in my year when I realize that another 365 days have passed…
… without a single invitation to a birthday party.
… without a “best friend” to sleep over.
… without having my child ask to call someone on the phone.
… without seeing someone her age greet her at church to give her a hug or ask her to sit together.
There are no friends who will look beyond that ugly label and see the sweet, caring child. The precious heart that is so easily confused. The mind that races with anticipation. The smile… oh, the smile… of a child so enraptured by fantasy and ready to share stories of her life with imaginary friends.
Be a friend to this child today. Include this child and his or her family in your prayers. Remember to invite this child to your home for play dates. Look beyond the mystery and find the person. Celebrate what we sometimes cannot because we are stifled by the mystery that we live each day.
Light it up blue for World Autism Awareness Day and give us your support.
I truly understand. It has been four years yet it feels just yesterday. I struggle with this everyday, and asking questions too. I have yet to find the courage to write a post for autism awareness day. It is too painful.
I understand, Lydia. HUGS to you, my friend.
How can someone with no children (or money) help?
Prayers. Praying for the family to be encouraged is powerful. Also, don’t stare. When Lira starts stimming in public and people stare, it makes me nauseous. 🙁
Thank you so much for asking.
You made me cry. Did I miss the Kleenex warning? Thanks for sharing your heart. I know it’s not easy. Sending you many hugs across the miles today, autism mom to autism mom, friend to friend.
I love you, Jenny! Sorry for the sob-fest this morning. Counting down the days until we can exchange real hugs. 🙂
Wow, I understand your struggles. I also have two children with autism, (out of nine). It was a hard diagnosis to face, but I will tell you, it does get better. My daughter is now 14 and thank God, she is finally starting to be accepted by a few others at church. My son is ten and we are still struggling, but I know it will get better. Prayers for you and your family. Thanks for sharing the struggle. It’s nice to know we are not alone!
Thank you so much for the encouragement, Sharon. I know that we are so blessed to not have a more difficult type of Autism but the social stigma is hard.
Wow, I understand your struggles. I also have two children with autism, (out of nine). It was a hard diagnosis to face, but I will tell you, it does get better. My daughter is now 14 and thank God, she is finally starting to be accepted by a few others at church. My son is ten and we are still struggling, but I know it will get better. Prayers for you and your family. Thanks for sharing the struggle. It’s nice to know we are not alone!
I have autism also. So sad.
You nailed it with the friend bit. It is so painful for me to watch my son get passed over. I have to bite my tongue when friends tell me about their kids’ birthday parties for their sons his age and once again, he wasn’t invited. And he is incredible. They are missing out on so much by not knowing him. But how do I convince people of that when what they see is a child whose speech pattern is a bit odd, who doesn’t make eye contact most of the time, who gets frustrated by group games? I hurt so much for him.
My hope is that with people (like you) bringing awareness to autism, your daughter and my son someday won’t be the kids watching on the sidelines.
Wearing my blue today! God has not asked our family to walk the road of autism; however, we are not exempt from its impact. We have friends who are recovering autism survivors due to a mom who invested her life into healing her children: http://autismrecovered.blogspot.com/. Though we don’t live close to each other, I’m blessed by her persistence.
We have since met another family struggling with autism. Their son is my son’s age, and we make sure to get together for play dates, birthday parties (usually 2 a year), and Christmas. Teaching our children how to interact, be patient with the repeated utterances, non-eye contact, and other differences allows my children to see that others like to play as well even if they play differently. We are in this together – in and out of autism. If we met you, we would accept you.
Meeting this family when our boys were infants, we have struggled through their diagnosis and treatments. We don’t view him differently because this is just how he is. And we love him for him, not for how or what he is or does. Hugs to you, Tabitha. Thanks for writing this post though it was a battle for you.
My oldest son (currently 14) was diagnosed with high functioning autism at 8 yrs old. Though I knew something was different with him I was dumbfounded and lost. I didn’t know anyone with a child with this or who could explain it to me. And it is still hard. It amazes me though how some people can see what I have grown used to. A trip to the emergency room a while back when he fell, the nurse asked me if there was anything she needed to know and I explained he has autism and she smiled and said “I thought so.” My heart goes out to anyone who has gone through this diagnoses. It is a learning process.
My daughter was diagnosed this year at age 5. The birthday party part is what I think hurts the most for me. I do not even think she knows, but it makes me sad for her. I am blessed that our school system has a class for autism and she is doing great! She joined that class at the end of November and has come a long way. Thanks for your post, and yes it brought tears to my eyes too.
I promised my son a trip to Monkey Joes today. I made the promise a week ago not realizing it was World Autism Day. So I sit here on a day I hate, reading your words and feeling as if I’d written them myself as I occassionally watch a child give my son that look they give him when they realize something is different and I’m crying. I realize I really new to join a support group. I’ve been so sad this year. 1st grade has been tough. The kids really notice differences and most respond poorly. Thanks for the post Penny. I shared it on my 3000 member Facebook page and I’ll tweet it later. Maybe someone will read it and care.
What a beautiful heartfelt post Tab! I know you expressed the heart of many other moms out there too. Thanks for your openness and transparency on this very difficult subject. I wore blue today for you and will continue to lift your family up in prayer. You’ve made things so clearly understood…it helps me to pray more effectively. Having a grandson with asperger’s, the social stigma is definitely a heavy weight to carry. Sweet Blessings on you and yours! Big Hugs! XO
Ahhh, I totally feel for you. My son (21 year old) is in the spectrum. Can so relate to the longing for him to feel like he belongs with his “peers”. Hugs and prayers to you.
Oh I am so there. Having the patience after the thousandth time of showing her to do a task, the crying when she has things not go her way and many other things. I love her very much, but it can be overwhelming. Thank you for your words.
You expressed this so well! My daughter is 5 and we’ve had the “official” diagnosis going on 2 years now, though I knew it in my heart by the time she was 15 months old. My blog is blue all this month for autism awareness and I will be writing more about our personal experience. Thanks for expressing this message so eloquently!
Your sweet little lady can come and play at our house any day!
Your sweet little lady can come and play at our house any day!
My family does not have an autism child, but as someone who had little friends in school and did not get birthday party invitations, etc., I can understand how seeing that would truely hurt. My family just moved from WI to TN in November and he started at the local high school in January. He was so nervous about a new school. But in the end, he has already made one friend, at least, and been invited during spring break over for a sleep over. I never went to any sleep overs as a kid and seeing that my kid does not go through what I did, makes it better. I am so sorry that your kid is having to go through that. I would invite her over, if you were local. That is one of the saddest things to watch. I wonder if you can find some parents who you can explain the situation to, maybe at church, or other place, that could invite her over to play with their kids/kid.
My little boy has only been diagnosed recently. I, too, constantly wonder what I did to cause this. Seeing the way other children treat him or look at him breaks my heart. Thank you so much for opening your heart and writing an honest post. I’m sharing this on my facebook profile in hopes that some of our friends and family will see it and understand that just because my Chubby Cherub is different, it does not mean he is less.
I try to be most sensitive to parents with children with different needs. Some moms alienate themselves and their children out of fear? embarrassment? not sure, but we try so hard to include them and accept them. I’m sure at least one of my kids is anxious, but we deal with that as best we can. Essential oils and a natural diet help immensely with ADHD and anxiety tendencies.
As a family, we offer hospitality that is never accepted or reciprocated. My 4 kids never receive invitations to anything social and rarely get greetings at church from other children. They don’t really know they’re missing anything, so I don’t really worry about it. I was a social outcast when I was in school.
Our family is different in that we’re military, and we home school while having strict behavior standards. I pray that this is our season (13 years?!) and eventually we will have friends who accept us. I wonder if people don’t feel it’s worth it getting to know us since we’re only around a for 2-4 years?
As a mom, we all have our special worries and problems with each of our kids. I pray for you and yours and for all moms who struggle with various needs.
My beautiful, funny, intelligent daughter …………well it is a long story. She will be 8 this year and last year was diagnosed with OCD which manifests itself in constant violent unwanted and intrusive thoughts. This year we are exploring ASD and Asperger’s; something we suspected 5 years ago and now she screened on the high end for it and we are waiting the comprehensive testing.
Today is her last day at public school and tomorrow I start home schooling. She has such a terrible time understanding the social structures and nuances of other children and can not play with them without it ending in disaster. School is too big and too noisy and to bright she tells me. She is above her class academically but suffers so badly socially. I just feel the need to make her world smaller right now. The stuff that goes on at school in the second grade, blows my mind. She doesn’t need to know this crap. She is young and innocent and can’t navigate the world around her. I am frightened and overwhelmed and tired of being as much a warrior as a mother. She has a younger sister (5) and it affects her and all of us so profoundly. Keira would like nothing more than to have a friend like herself. I keep telling her there is someone out there for her and we are going to find this little girl and hold her tight……………because we “know” ……….and love!
Thank you for giving me both tears and smiles today with your beautiful daughter.
People are stupid.
That’s all I could think of when I thought about your daughter and others not being invited to birthday parties, sleep overs, play dates, or church pews.
I am a mother. I have a lot of kids! And darned it, I would never ever think of not inviting your daughter or anyone else’s kid over for any reason. It would be YOUR choice if you didn’t feel comfortable making the plans. Leaving it up to her schedule, her routines, ect. But to not even give her a chance to explore that.. that’s just wrong.
We are only lucky enough to know one sweet boy with Autism. He’s a bit younger than our kids. But we always make a point of letting him know we see him, we always talk to him, and even though he rarely seems to notice.. his parents do.
I am so sorry other parents in your community haven’t figured out that teaching your children how to be kind and good people starts with them.
C.
PS, we loved your story so much Penny was featured as our Wordless Wednesday’s face of the week.