A year ago I was “introduced” to a mommy blogger by a friend. This mommy blogger had a similar story as what we had with Obie, so my friend connected the dots and sent the website my way. I connected with a series where she asked these questions to special needs families and presented the answers.
This was incredibly useful in processing and putting into words what we were experiencing. It is also remarkable how much has changed and been redeemed and restored in a year’s time.
1) give a brief explanation of your child’s special need and age.
Obie is Autistic, with splashes of sensory processing dysfunction. He will be five in one month!
2) what is important for me to know about your child?
He wants to be included. He may not know how to convey this, but all he wants is to be included!
And he’s a smarty pants with a crazy memory! He knows what toy is missing, where he left it, and he probably had a reason for why it was there! This causes some issues when he wants that toy, but I digress!
3) what is something that is deeply hurtful about interactions with others, pertaining to your child?
(Last year this was my longest answer! God has been faithful in using ALL things -even the messy parts- for His glory!)
I think I just simply find it difficult when he is not included. Sometimes this looks like being ignored by kids, sometimes it looks like being made fun of by kids, sometimes this looks like being ignored by adults, and sometimes this has looked like adults deciding he is best not with his age- peer group. His desire is clear; he wants to be included. So my job is to make that possible in as many situations as I can.
3 and 1/2) can you think of a super positive interaction with other people, in dealing with your child, that left you with a smile?
Many of my friends are so good to us. One friend, in particular, goes the extra mile to talk to Obie, hug on him, and just get on his level so he can make that eye contact we’re always working on! She treats him like one of her own, and when she says she loves my kids, I know it to be truth by her actions.
4) what is helpful from me whenever i interact with your child?
Obie loves to talk, and I am needed less and less as interpreter, but the fact remains that bringing your patience and playful personality to any interaction you have with him is the most helpful. Also, maintain the same expectations of him as others you interact with. Just because he can’t communicate as effectively doesn’t mean he doesn’t understand everything that’s going on. He’s been showing this to me since the beginning, and I am just now seeing it in this light. I can recall a meeting when he wasn’t quite 3. The evaluator was asking about self care and his ability to wipe his nose by himself. He was playing, seemingly oblivious to the conversation, when he went to the teacher’s desk, retrieved the Kleenex box, and brought it to the table where the meeting was being conducted. He couldn’t say the word Kleenex, but understanding and expressing aren’t necessarily connected.
5) sometimes i don’t know what to say. what are good questions to ask about your child?
“What’s something new Obie has done lately?”
This is the same answer as a year ago. I like to focus on the positive, so give me a chance to examine what he’s doing well and what growth we’ve experienced.
Today I could answer how his OT, in a progress report, expressed humor that when they practice taking a shirt off he stops midway to pretend to be a monster, and needs to be reminded to continue to take his shirt off after his monster game is over.
Or I could tell you how he says “Bear so cute!” Anytime he talks about his littlest sister. I could tell you how patient and kind he is to the littlest of our crew and how he just soaked up every second of holding her today.
And I could tell you how excited he is to demonstrate his dance moves when he hears the familiar songs of Moana.
6) what do i do when your child is acting out and i’m standing right next to you?
Offer tons of grace to him and to me. Basically what looks like acting out to you may not be a deal breaker to me because we are working on so many different things. But ultimately, show me you care by affording me the time and energy to manage an outburst. That can be done by hanging out with Bear or watching Beasty and just freeing me up to focus on helping Obie.
My most recent example was a park trip that ended with a ball in a neighborhood lake area. I couldn’t go after the ball, we had to leave it, and he just crumbled. Most kids would be upset, but his age, size, and intensity all factored into a tough conclusion to our trip. He was finally okay when I offered a sliver of hope by calling B to ask, in earshot of Obie, if he would please stop by on his way home to see if he could help. There was still wailing, but Obie wasn’t destroyed on the ground over his loss.
In those moments for him, I don’t really see what’s happening around me or who might be watching. I just tough through it and hope the girls are ok as I try to deep pressure his arms into noodles enough to head home. (It is our go-to for meltdowns!)
I didn’t know that landscapers were around. I didn’t know that one decided to go in after the ball. And we nearly made it to the end of the street before I heard a man calling after me and running with Obie’s treasured and rescued possession. This is a tangible way that getting involved, even with a stranger, can make a world of difference for that child or caregiver.
7) how has the gospel intersected your experience with your special needs child?
I think God has used Obie to open my eyes, my heart, and my life to a population I didn’t realize was marginalized. I think I knew people with special needs experienced difficulties, but I never realized how that impacted so many facets of their lives. He has used Obie to show me that God came for ALL people, and not just the people who can fit into the mould that looks and acts “typically”. He has used Obie to show me that speaking up for what is right isn’t always comfortable, but can lead to fruit that is beyond my wildest expectations.
Obie has also taught me that the forgiveness we have in Jesus is nothing we earn or deserve and should, in turn, be given freely in all our relationships.
8) what are some ways i can help you?
This is tough, but mostly check in on me. Make sure we are still alive and kicking over in over-scheduled-calendar- mode. Listen. It helps to have someone willing to listen and not give advice. I’m usually processing through a lot of information, emotions, and events, so helping me process by listening can be so helpful!
And know that when I make a joke about our lives, experiences, and unique perspective it is okay to laugh with me. Laughing is literally how I make it through many days!