I felt that distinctive wetness settling into my eyes. My throat struggled to create sound around the choking sensation. I was at a work event and determined not to cry.
My friend truly cared, so I wanted to give her an honest answer.
But what was the truth? And could I say it out loud without tears?
The truth is that epilepsy sucks.
My sweet boy has moved from slightly defiant to full-blown defiant. He grows faster than his epilepsy medications can handle and has break-through seizures because of it. He developed ADD, after being a kid with incredible focus.
His teachers are frustrated. His older brother is frustrated. We are frustrated.
I moved from functioning pretty well to seeing a therapist and treating depression.
Life changed.
The other truth, though?
I am blessed to be the mom of an epilepsy kid.
Of all the disorders and exceptionalities a family can deal with, we were more prepared to deal with this particular one.
My husband and I studied memory, learning, and child development when we earned our undergrad degrees in Psychology. I have an M.Ed and a teaching certificate and taught school for several years. For most of my career, I was a lawyer for kids, focusing on education and juvenile law.
We understand the tremors that come from the medication and realistic expectations for a child struggling with this disabling disease, in a way that other parents, without the education that we have, can't.
We have a stable marriage. We are mature (in our early 40s) but young enough to be energetic.
It's almost as if God created us to be this precious child's parents.
We could have been parents of a child with a heart transplant (like my inspirational cousin) or who is wheelchair bound (like one of my very dearest friends).
We aren't in the medical field and weren't prepared for that.
But a memory, learning, and behavior problem?
That is in our bag of tricks!
Since we are becoming pros at dealing with out of control behavior (including tantrums that are not supposed to come out of a seven year old and total shutdowns/refusals to speak), I've discovered something that actually calms my kid down.
The 5-Step Parenting Trick
STEP 1: WALK HOLDING HANDS
I grab his hand gently and whisper, "let's walk." We walk around and around. Once he is calm, I whisper, "we'll sit down, whenever you are ready." And then we keep walking.
STEP 2: SIT ON THE FLOOR
Eventually, he sits and I join him, right there on the floor.
STEP 3: KEEP PHYSICAL CONTACT
I keep some physical contact, either holding hands or a light touch on a shoulder or knee.
The touch is calming for both of us.
STEP 4: LET THE CHILD SPEAK FIRST
I invite him to tell me what he is feeling. I promise to listen. Then I get silent.
I don't say, "what's wrong?" as he might not even know. I don't preach. I don't explain my point of view or the punishment.
I just listen.
STEP 5: FIND A RESTORATIVE CONSEQUENCE
Once I listen and acknowledge his feelings ("I hear you are sad because you could not choose dinner"), I set out the reasoning for the rule, followed by a restorative consequence.
A restorative consequence is one that will fix things or fix the harmed relationship.
For example, I might say, "in our family, we sometimes choose our dinner, but not on days when Mom cooks. You don't have to eat it, but your only other options are not to eat or to choose from any fruits or vegetables in the house.
Now, you need to rejoin the table peacefully."
I keep it simple. The consequence is always the last sentence, as ADD kids should always get the explanation first and the instruction - a single instruction at a time - last.
Some things, like being rude to a teacher, get a more serious consequence.
"No more electronics tonight." "Write a note apologizing to your teacher."
So far, this is working amazingly well. I truly hopes it helps someone else.
I managed not to cry at the work event, by the way. It ended up being the most refreshing conversation I've had all week.
Etcetera.
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I have not walked in your shoes but can imagine how stressful it can be. As you said, you and your husband are probably more prepared than many parents to deal with a child with epilepsy. Before I retired, I did work in an elementary school and saw more than my share of behavior issues coming from both physical and emotional issues. I know your approach to handling your situation would have been REALLY appreciated by the school staff. Thoughts and prayers go with you through this journey.
ReplyDeleteGreat strategy. This would work with any kid who loses control.
ReplyDeleteI'm definitely going to try this strategy with my kindergartner who is having some behavioral/defiance issues, as my husband and I go through separation and divorce. This transition has been very hard emotionally on my son.
ReplyDeletewrite more about this theme!
ReplyDeleteADD mom with 1 (2?) ADHD kid here. not a good constellation :D
I have no idea what shoes you are walking in daily. I have other struggles with my 2nd grader that I find many of these techniques work with her. Nicely done momma!
ReplyDeleteI can honestly say I have a little idea what your life is like. Our daughter was diagnosed with Type I, insulin dependent diabetes at 10 1/2 months of age. At age 3 she was also diagnosed with epilepsy. Fortunately her epilepsy is managed will with medication - as long as the meds are taken and as long as her blood sugar doesn't go too low. Raising a child with any chronic illness is challenging to say the least. It definitely makes raising a 'normal' kid a piece of cake, but I firmly believe we grow and benefit from the curve ball we were dealt. I applaud you and how you have managed to not only survive these challenges, but rise above them. Coincidentally, my latest post is about how "change" affects our lives....CHeck it out if you have time. Best wishes and know that your son is one lucky boy to have a mama like you!
ReplyDeleteHugs Mom! You have some great strategies. One thing you might want to look into for school is a fidget chair or yoga ball. Sometimes the constant movement of a chair can settle children. Thanks for stopping by Mommas Wonderings :)
ReplyDeleteI was just thinking the other day about how my kids are different in ways that I don't really know how to handle - we're learning together, and do better some days than others. I fully believe that we are giving our children for very specific reasons, some are just more hidden than others. Bless you for melding your two worlds so effectively! I've seen some parents do awesome things with kids in their professional lives and not make the cross over to home life so well.
ReplyDeleteHang in there! Those are great tips. I've used a few of those techniques with my kids to calm them- and sometimes to help calm myself. The other thing I've done is use their name and pause before speaking. That's more for me. It gives me a chance to take a breath and reign in my irritation. The other is to use eye contact with the physical contact. I know I'm making a connection that way.
ReplyDeleteI would agree with the idea to try a big ball for a desk chair in school. My oldest was very fidgety & distracted- classic ADD. His 2nd grade teacher was a great teacher in many ways, but wanted him to behave to fit her mold without thinking through how that could happen. (He was supposed to want to make her happy. LOL) He had a bit of a struggle that year, and that's the only time I've had to go to a meeting with both parents, 2-3 teachers, social worker, and principle. I was a little intimidated, but my husband is great with things like that.
His 3rd grade teacher had a different approach. You could tell she really loved kids and appreciated their individuality. She had him use a big ball in place of a desk chair, and did a few other little tricks. It worked wonders. He wasn't ever trying to be intentionally disruptive, he just didn't know what to do with that energy. Same kid, but we saw what a different approach did for his behavior.
Now he's 15, and we're past that. Teenagers come with a different set of challenges. :)
I like your suggestions here. Touch is really underrated, but it can make a huge difference to your child.
ReplyDeleteYou sound like an amazing mom! :) This is such fantastic advice. I am going to pin it for future reference! Thanks for sharing from your experiences!
ReplyDeleteThis is wonderful advice for any parent! Well done. There are some things here I never would have tried. Pinning this in my Important Insights board.
ReplyDeleteI think this is a great strategy. I wish I'd known this when my son was little and going through his ADHD struggles. Now that he's an anger-prone teen, walking around hand holding is not so much of an option.
ReplyDeleteYour story is inspiring! Way to stay positive and trust God is in control.
ReplyDeleteThank you for sharing your story and your strategies. I imagine they would be beneficial for any type of struggle. I remember when my youngest had a huge melt down 10 years ago (one that was unlike any other I've experienced) with arms flaring around and loud cries as if she were being hurt, I had no idea how to calm her down. These outbursts happened many, many times after that and remember crying to myself because I didn't know how to help her. She wasn't able to talk at the time so I had no idea why she was acting that way...and to this day, I'll never know. I wish I had your tips and suggestions years ago! :)
ReplyDeleteThanks again for sharing your post on Simply Sundays. I look forward to reading more of your posts.
While I always enjoy your posts, I feel like I got to know you with this one. I couldn't imagine how difficult it would be to walk in your shoes but you seem to be handling it with grace. Your son is lucky to have you for his mommy!
ReplyDeleteThanks so much for sharing at Share The Wealth Sunday!
xoxo
Lisa
It really is awesome how to end up with the kids who need us the most. You are doing amazing! I don't have to know you, to know your heart is in the right place. Your writing shows that. From someone dealing with 3 kiddos with differing issues I can say your tips are right on point, and have helped our family quite a bit. Especially the one request at a time. It is amazing how something so simple can make such a big difference, not only for our kiddos, but for our sanity. :)
ReplyDeleteThanks for sharing!!
ReplyDeleteYou are such an inspiring mama! Thank you for sharing with these parenting tricks!
ReplyDelete"It's almost as if God created us to be this precious child's parents."
ReplyDeleteYou know it's true ;)
these sort of tips work well with my son, he's a natural born leader.
Thanks for linking up with the FrugalMommas team!
Thank you for sharing this on the Art of Home-Making Mondays. This was very encouraging to read, especially how you view your situation in God's light. thank you and God continue to bless you with wisdom every day!
ReplyDeleteI am so thankful for all this encouragement!
ReplyDeleteKristy,
ReplyDeleteWelcome to Thought-Provoking Thursday! Although I did not have epilepsy, I was a child with special needs due to a congenital birth defect. In my opinion, God only chooses special people to be moms to special kids.
Thanks for sharing your wisdom with us today.
Blessings,
Lyli
Wow, it's amazing how you're able to understand your child's struggles and help him. I'm so glad to hear this approach is working and hopefully this will help others! Thanks for sharing at the Manic Mondays blog hop!
ReplyDeleteThank you so much for sharing your post with us at the #AnythingGoes Link Party! The new party goes live today at 6 PM ET.
ReplyDeleteThank you for sharing your blog post on the What Are You Doing? Blog hop. I know every child is different, but the best thing to do is take the time to let them share what they are feeling. It's amazing to see how God works in situations like this too. Thanks for sharing :)
ReplyDeleteOne thing to also keep in mind is that the majority or epilepsy medications are also used to treat mood disorders and can change your child's mood.
ReplyDeleteThese are such great tips. As a mom of a child with sensory processing disorder, I can really use these. And yes God did prepare you to parent your precious child. I love seeing His hand work through all things. Even the difficult ones. Thank you for sharing on the Faith Filled Parenting LinkUp.
ReplyDelete