Sometimes, my heart feels a little broken. I wish I knew what else to call it.
Sometimes, I look at my oldest son, Scott, and struggle with an overwhelming emotion that borders on heartache.
In Seeing the Negative Space, I told you a little bit about him. He was a preemie in NICU/PICU for over a month. He’s amazing. He’s a miracle.
And he is brilliant. He’s so smart, his pediatrician calls him “Scary Smart.”
And, he’s different. There are just some things that are different about him.
During our week in Florida, he has had a chance to interact with other kids. Therefore, I got a chance to see how they responded to him. Some were mean – teasing him and running away from him. Some avoided him. Some played with him.
It occurred to me that I’ve avoided these situations all year. While he was in school, he’d regularly get birthday party invitations and such but I just never took him. Because I knew that he was different. I didn’t want to see it or see him treated differently. I wanted to keep him in our safe circle of family and church friends, friends who love him and whose children love him.
The other night, after stopping him from chasing two little girls who were screaming that he was a monster – with intent of making him feel bad – and he laughingly thought they were playing fun with him, I told Gregg that I want to keep him sheltered until he outgrew it. Gregg told me he’d never outgrow it, and that sheltering won’t help him develop coping skills.
It makes my heart hurt because I know my husband is right.
He has the social emotions of an immature toddler with the body of an almost-6-year-old and intellect of a child much older. His emotions mean he gets very loud and hops up and down in absolute and total joy and excitement. He hugs friends, even ones he just met, and tells them that he loves them. His intellect means he remembers children he met when he was 2 and expects them to have the same power of recall and shared experiences but his age means he doesn’t understand that they don’t, or that they can’t, or that they just plain don’t care.
This week, in an effort to protect, I pulled him away from those mean girls, girls who, once they stopped chasing him, sat down and ignored him entirely. I sat him on my lap and installed a video game onto my phone that he’d been begging me to install. I’m not a fan of video games, but this thrilled him and made him forget these girls who didn’t want to be nice to him, and occupied him while they played without him. It eventually pulled them toward him, and their interest in the video game made him so happy that — in his wonderful and loving and different way — he shared with them and encouraged their interaction. When it was time to say goodbye, he was sad and hugged them and said, “I love you.” It was nice to see them hug him back.
The worst part is knowing that one day he’ll realize that he’s different. He’ll realize that kids are being mean to him or that kids just don’t care. One day, a simple game on a phone won’t distract him and it will occur to him that he’s different. That’s a heartache I can’t protect him from. His daddy wants to teach him how to protect himself. The mama inside of me — that same mama that you have inside of you if you have children of your own — needs to protect him. And there is absolutely no way I can.
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I feel for you. I have a child who is different too. There is no label for him, he is mostly “normal” but he has different social cues that other get and he doesn’t. He has a few friends but seems to gravitate toward the “bullies” or kids who I consider a bad influence and he is one who wants everyone to be nice and doesn’t see the “bad” so much in people.
He is a bit older now and I wonder how it will go when he gets to middle school. I am thinking of homeschooling him as it seems there are always issues at public school we are dealing with, but the other side of me wonders if sheltering him in the home school environment will do more harm than good in the long run.
It is hard to balance the love and protection against he preparing him for the real world out there.
Scott is the very best kind of “different”. He will eventually learn some coping skills, and learn how to navigate in a world that doesn’t value “different”. He may even change the way some people think about “different”. And that’s a good thing.
I can’t say I understand how you feel because I am not facing this same issue but I am a mom and my 3 girls are through high school and only one left in college. My mama heart hurts for you and I want you to know that I will be praying for you and your husband. I will also pray for Scott. You are a good mom and God knows what is ahead for your boy. Please Lord give them wisdom to parent him and please Lord protect Scott!
You echo the struggles I have as well. It’s hard.
It sounds like you and Gregg balance each other well. I think with you two as concerned parents you will help Scott become a well adjusted adult. Scott is still very young and with time will learn coping skills.
You have only ONE critical responsibility to your son. Teach him that his difference is UNIQUE, RARE and very VALUABLE. Teach him to cherish and protect it from being smothered crushed or denied… He will grow to be proud and confident of his uniqueness and eventually share it with the one who will reconize its true beauty and purity. And it will serve to guide and shape the Man he will become. If you do your job well, Another Martin Luthor King personality can emerge. The pain of rejection and taunting will not even closely compare to the pride of self and confidence he will master later as he realizes the great beauty of his SPECIAL SPIRIT! your children’s PASTOR FOR LIFE…lol Don
Hallee, I would encourage you to seek out assistance. There is nothing wrong with looking for help to learn the best strategies for teaching him to cope. I don’t have kids with social-emotional coping problems, but my 3 kids all have their own issues. I value the relationships that I have with their therapists, teachers, and above all other parents in the same situation more than anything. They are people who can make suggestions and have knowledge and experience beyond what I have.
I know that in the past you haven’t wanted to “label” Scott. I’m not telling you that you need to. But when you have a diagnosis (whether it comes from the school district or a private physician) you have a key to unlock the door to Scott and his unique personality. I know that you have been able to get through to him in many situations, but at some point you’re going to need to hand that key over to him, so that he can unlock his own door. I’m not saying that you can’t do it by yourself, because if anyone can, you could. But please don’t make it harder on yourself and Scott than it needs to be. Ask yourself honestly, is this a pride thing? Am I not “labeling” him because I am too proud to ask for help, to humble myself before a psychiatrist or the school district and admit that my son needs something that I don’t have the unique tools to give him?
I am not at all trying to discourage you, I’m really not. I want to challenge you to honestly consider your motivations. And please know that, whatever your conclusions, you have me supporting and praying you through all of this.
The difference between your children and mine is that they have actual, diagnosable physical medical conditions.
With Scott, it would be total guess work and nothing more. He has tendencies toward that “condition” and tendencies toward that “diagnosis”. There’s nothing that anyone would ever be able to accurately pinpoint.
We actually have to have an IEP for him kindergarten. So, he’ll be evaluated for that.
And, thank you my friend for your prayers.
Don! It’s so awesome to see you here — we LOVED having lunch with your beautiful bride yesterday. Wish you could have joined us!
I got something from Easter Seals (where Toby goes to a Help Me Grow program) that said that the Ages and Stages questionaire is available online. Here’s the link: http://www.easterseals.com/site/PageNavigator/ntlc10_mffc_homepageasq.html
Just one more tool for you.
I couldn’t have said it better myself. And I know the concern and love you both have for your children (and others) as well as your innate goodness, wisdom and again, capacity for love. I have absolute confidence in your parenting and how you will, indeed, shape Scott (and Jeb and Kaylee, as well) into wonderful human beings. Love and my kind of faith and prayers to you all! *huggles*
Hallee- Thank you so much for posting this! Sometimes it helps just to know that you aren’t alone and I thank God that He gave you these words of encouragement for the rest of us. My son, Weston, was a micro-preemie (born at 23 weeks gestation). He was given a 1% chance of survival at birth, but through prayer and miracles (yes, absolute, medical science cannot explain them MIRACLES) he survived. He was diagnosed at 3 with multi-system cancer. Again, through prayer and miracle (along with 18 months of chemo) he was in remission. Weston is 10 now and he, too, is a little “different” but it has smoothed out some the older he gets. He is brilliant when you talk to him and understands things no 10yo should. But, like Scott, he loves whole heartedly and unconditionally. He hugs people he just met and will search for a reason to compliment someone. It puts most people off but it makes me see the love of God. That’s how God loves us. Whole heartedly, no reservations and even though we don’t deserve it.
Children his own age do not understand him and for me its like having 8 year old twins (he associates best with his younger sister). Weston mostly likes to play NEXT to other children but not with them. And his goal is to make people happy even when I see that the others are being harsh and judgmental of his differences. I try so hard to protect him from the meanness and bullying of children but sometimes I just can’t. He doesn’t understand it yet and I hope and pray that the love he feels for other people will always shield him and allow him to still see the good in them even when they show him the bad. And I always try to see that Weston (and it sounds like Scott, too) loves others the way God does… and that is a great and wonderful Blessing from these precious miracles that we have been given.
Thank you for the post. I understand your feelings, heartaches, as a mother they will always be there. My son is 29 years old, no physical disabilities, but very much socially that of a 10 year old. He loves life and people, the Lord has bless him with not understanding the subtle clues that are given by people, which this does prevent him from feeling hurt, but I see them. Trust your instincts, as you know what is best for Scott, the Lord put him in your family to raise and love and as you seek the Lord’s direction you will know what is right for Scott. There are many time in his life that you will need to shelter and protect as he goes through life’s different stages and there will be some of the same heartaches over and over again, but the joy he give you makes it all worth it. The Lord chose you to mother a very special child,how very blessed you are.
When my daughter was 6, she was hit by a truck. While she survived the accident and came out of her coma, we noticed a lot of changes in her. Today, she is a wonderful, charming 17 year-old with the tastes of a 10 year old. In all ways, she is 17…but she much prefers things like Hello Kitty, stuffed animals, and things that most 17 year olds have long put away. Most people simply notice how charming she can be, and it is only through time and interraction that they realize that she is different too. She knows on one level that she is this way, but never really questions it. She simply likes what she likes. After 10 years of struggling, I have come to realize a few things. 1. We have to let go of our “ideal” for our children and remember that God made them His way for His purpose. 2. Teach them to be a strong advocate for themselves. Being independent and different is okay. My daughter’s response was usually one of “marching to a different drummer”. My choice of words is that she is a little eccentric. 3. Role play challenging situations. Practicing ahead of time makes it easier. But keep in mind, that what might make you uncomfortable or protective, your child is perfectly accepting of. In other words, try to find out what their take is on a certain situation without prejudice. As an adult, our rose colored glasses have cleared up, whereas he might still see things a bit rosy. I hope this helps and will keep covering you and your family in prayer.
I really should read your blog more…I have struggled with this too. While I can’t say that my son and Scott have the same differentness, I have seen things at the playground lately that I’m truely concerned for. With Kindergarten approaching come the fall, I wish I could just keep him home forever…BUT I know he will learn much better at school, just b/c I’m his mom and he listens to others better. I worry that he will either be bullied or he will stand up for himself and get caught/in trouble. I saw this on the playground one day…we left after the incident but mostly because we had to go. But once I asked him what happened I understood…the boys were pushing MY son, and I asked them to keep their hands to themselves. Later they moved across the park and my son pushed back, playing b/c he thought it was ok…and that little boy fell, cried like he was being beat on, and a mom marching at me telling me my son was bad…she missed what her son had done.
BUT the other wonderful thing that happened was he has recently hung out with a 3 yr old that has neurological disorders. he never ONCE asked what was wrong with him or why he was like that. he played with him like he was a “normal” kid. He has also been getting along very well with another little boy that is 4 and he gets worked up if things don’t go his way, I think there is more to him, but I don’t know the details. but I watched at the park last week that he asked the boy to do something else b/c he could sense that he was getting upset…it amazed me that he did that and he knew what to do to remedy the situation.
and now that i have rambled…you are an amazing mom and as much as it might pain us to see our kids in pain/hurt they will get through it why? because they have an amazing supportive family at home!
but don’t worry if at any time I sense issues at school…he will be homeschooled!