It isn't easy.
K has sensory issues which means that something like putting on jeans is a battle. She doesn't like the feel of the button or the jean material. She talks very loud but hates loud sounds. She thrives on schedules and does much better when she knows what is happening next. When something bothers her, she tends to yell or scream which only makes things worse. If someone tries to deal with her and gets angry too, it continues to make it almost unbearable.
It breaks my heart when I see her struggling. When I look into her eyes and see the panic and try to reach her so she knows she is safe. She is okay.
I know that 10 year-olds don't pitch the kind of fits that she does, and she knows it too. And she tries. I watch her as she attempts to not have a meltdown. I watch her as she does everything in her power to gain the upper hand over the emotions.
I see what others don't.
My parenting skills have come into question more times than I can ever begin to count. People must think I am deaf or blind to not hear the comments or to see the eye-rolls. But my hearing is great and so is my sight. Believe me, I have questioned my parenting skills. Probably more than most because my child is not an introvert and she is not quiet. My daughter does not go unnoticed. Pair that with the fact that she is taller than most 13 year olds and K is the perfect target for other parents.
And that makes me mad. PDD-NOS is not an easy diagnosis. It's basically a form of Autism that may or may not be like other forms. Some kids have a few of the symptoms or just a couple that are very pronounced. K's is she needs structure and she tends to act out aggressively when she feels "out of control". She also struggles with anxiety- which does not help.
But she looks normal. So people become uncomfortable when this beautiful girl suddenly screams and cries and throws a fit like a toddler. Usually we can trace it to things like sudden change, someone yelling at her, fatigue or big events. We know that. But others may not.
I have to mention the small group of friends that our family has. They have been so wonderful and have helped encourage our family as we journey through this. We have taught them what we have learned and try to communicate how best to help K. They don't judge or eye-roll or get angry when K screams and flails around. They help her with her coping skills and are quick with encouragement and slow to criticize. They love her.
And that's the bottom line. Love.
I just felt today that I needed to share my struggle with my daughter's PDD-NOS and how it affects my family. How we are doing everything under the sun to help K. How with lots of love and patience she will learn to not only live with this disorder, but to live a full, vibrant life.
"Love never gives up. Love cares for others more than for self." 1 Cor. 13:5 (Message)
"Be brave, be strong. Don't give up." Psalm 31:24 a (Message)
I know there are those of you who are struggling with issues that your children have. My best advice to you is: Don't give up.
Be strong even when others criticize.
Love them like crazy!
I end this post with the song that always reminds me of my love for my darling daughter. Billy Joel's Lullaby.....
Hugs and love to you and K. As we walk the same journey with our beautiful, bright, a bit too tall, a bit too loud, and a bit too temperamental children, let us remember that while our children have struggles with developmental or emotional delays- those that judge them and roll-eyes have a different type of disease, ignorance and intolerance. I understand this all too well. We shouldn't have to put neon signs on our children announcing their disorders just so the world around them can be "accepting". I got so angry at a man at Walmart for stepping in to correct my son when he was having a meltdown. I actually looked the man in the eye and said, "He has Asperger's. It is manageable through therapy and a lot of love... unlike your disease." When he stated he didn't have a disease I was quick to point out that rude, nosy, and intolerant were symptoms of hatred, and hatred is indeed a disease. The look on his face was priceless! LoL
ReplyDeleteI hear ya Donna! You know what we have walked through this past year and I appreciate your love and encouragement! Love is the most important thing with our kids. I'm sure trying hard to educate others and I know you are too! Love ya!
DeleteEpic response, Donna. You get gold bananas for that.
ReplyDeleteI wish I'd've been diagnosed when I was younger. There's so many things that I knew wasn't "normal" about myself (and others that I never realized were abnormal), and I just hid everything because I didn't know what else to do. It's really frustrating to look at something and know it should make sense, but it doesn't.
Hearing you two talk about your kids is a blessing to me because it helps me better understand my Aspergers. (And help me see that, while I may have failed by many of the world's standards, I've also overcome obstacles most will never face - primarily on my own.)
I guess in some ways I lucked out being more introverted. I usually didn't stick out enough to garner negative attention.
Not wasn't - weren't. Looks like it's past my bedtime. :P
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