Life with kids is mentally exhausting. Not only is it exhausting in the moment, but as they get older, I replay conversations in my head, and try to think of new ways to get messages through to them. Saturday was a day of big ups and downs with our son, David. He had mostly great moments, with some loud, door-slamming/stomping ones sprinkled in there. I was hoping Sunday would be so much better. He did great getting up, but the moment Knut asked him to bring the kitchen slop out to the chickens, he melted down. Right before church. Again.
It comes out of the blue. I suppose sometimes we see it coming. Getting David to do basic things our other kids do is either easy as pie or like pushing a boulder uphill. You don’t always know which scenario it will be when you ask. But once you ask, you are committed. You give in once, and he will push hard every other time tenfold. It’s just exhausting.
After our roller coaster of a day emotionally on Saturday, I spent some time just sitting on the couch after the kids were in bed, and just reflected on our situation…again. I thought about all the words that David had yelled at me during the day, and how it was so hard to make him understand that some things just need to be done. I felt like I just couldn’t get through to him.
I thought about how we had never sat down and fully explained to David all of his diagnoses. He knows about his food issues. But does he know why he visited a psychologist and therapists? Does he understand he has learning disabilities? We’ve just always told him, “you just learn differently” or “your brain just works differently.”
Have I ever acknowledged to him fully that things just aren’t different for him, but they are harder for him?
I was thinking that he’s getting old enough that maybe I should tell him the name of all that he’s dealing with. Maybe I should lay out the choices that the doctors gave us, and the ones that his dad and I picked, and why.
I realized I was trying to shelter him for so long about these things, because I didn’t want to make him feel stupid (because he’s not), or make him feel like he had any excuse to not do his best. I was texting a friend about this earlier last week, and she texted something back along the lines of, “Yes, but Gretchen at some point don’t we all have to face our limitations?” Wow. I’ve been thinking on that a lot.
So Sunday morning, he was melting down before church…again. Knut had talked with him, and then was letting him have some alone time to calm down. It was my turn to go in and try to snap him out of his mood and get him in the car. I went in with a little yellow notebook and a pen. I just sat down and started writing.
ADHD
SPD
Dyslexia
“David, I need to tell you something about yourself.” He looked up. This was new. I asked if he remembered when he went to the “head doctor” and took all those tests and how they were all so nice. Yes, he remembered. I explained to him that he didn’t just have Alopecia. He had some other problems that he also dealt with everyday. I wrote down each diagnosis, and explained what about each diagnosis made his life hard.
I gave each of his daily struggles a name, and it was the first time he had heard these names.
I can’t believe he’s never heard these terms.
I could see his wheels turning. Under that I wrote out all of the treatment options that were offered to us, explained which one we chose, and why. I said that when he was 18, if he wanted to pick a different treatment option, he certainly could. He nodded and said, “But I like the one you picked. That makes the most sense to me.”
(FYI, David does not have autism. We were just talking about how kids with ADHD and Autism have SPD in common.)
I showed him the things the doctors predicted he would be able to do, and what he’s actually been able to accomplish because of his hard work and diligence. Here he had thought that he was always behind, and not very smart, and he realized that his hard work had brought him further than anyone could have imagined. I told him how the world doesn’t always understand diagnosis’ like this, and some of the obstacles that will come down the road that he’ll have to figure out.
I then told him that we can either do 2 things as his mom and dad. We can treat him like he is disabled. That would make sense, because it is a disability. Things are legitimately harder for him. Things are hard for him all day long. We could tell everyone around him to treat him differently, bend to not upset him, and make his life easy. I called this the “disability land.” I told him this land was kind, and it was fair. It treated everyone according to their abilities. Not everyone understands disability land, or even wants to understand, so it’s often full of pity and misunderstandings, instead of respect. Sometimes it’s okay to stay here, and just take a breather.
The other place is the “real world” land. There he is expected to sit in Sunday school just like all the other kids. He will get hired for jobs because he’s clearly the best worker. He will get graded and compete with other students, on their level, not on his handicapped level. This path matches the things that he dreams about, his goals, and wishes. But this is the harder path. This is the path that will require we continue doing some occupational therapy at home, force the brain to make new pathways, and work hard on self control, and explaining social cues that his easily-distracted brain doesn’t always pick up on its own. It is the big work-intensive path.
It’s the path we picked. I told him, that when he gets his standardized test done every year, I can choose to give him the ADHD handicap, or I can have him test like a normal kid. I pick the normal kid test every year. I told him that’s because I knew deep in his heart, he would want to compete for a job someday without a handicap. I knew deep in his heart he was an overcomer. (He thought about this and said, “Well, I’d rather push to learn a lot of stuff than to just get good grades. Learning stuff is much better than just getting a good score.” That made this homeschool mom’s heart jump for joy to hear.)
I basically told him that his dad and I had picked the harder path for him, but this other world was still available. We just didn’t think he’d want it. He agreed with us. I told him that decision we made has consequences just like all decisions. It means that life will just be hard for him. Simple things will not be simple for him. He was going to have to work twice as hard as everyone else. But the good news was, each year would get better, easier, and in the meantime he will develop a work ethic that will surpass many of his peers. His work ethic is one of his greatest gifts. And if he ever wanted to pick a different treatment plan, just to try it out, or even just to get a break, we would be willing to consider it. But as of now, we were picking the path of OT prescribed activities to open up those neurological pathways, and hard work.
I told him that doesn’t mean that he doesn’t need to go back to disability land to rest. It doesn’t mean that we don’t have to consider that some of his needs are different than other people’s needs. It means that we are choosing which standard he will go by, and we choose the standard of real world land. We will just have to work harder and with more creativity to reach that standard.
David was quiet the whole way to church. He was deep in thought.
He made it through Sunday School for the first time in a month, and then he and I were assigned to the nursery duty during the main service. There has been a lot of kids in the nursery in past weeks, but there was only 2 in there this time. As we played dollhouse with the little toddlers, he just asked questions, and I answered the whole run of them.
We talked about how he not only has disabilities, but he has abilities that not many other kids have. For instance, he is testing nearly 4 years ahead of grade level in math. He’s just started computer programming and is fantastic on it. I told him that it was very likely that my smart phone was developed by someone who had the same diagnosis as he did. He has great abilities. We talked about the skills he would have to learn to go to college. We discussed different strategies to developing those skills with which he struggles.
All of a sudden he understood all that Knut and I have been trying to do. He understood why he got certain chores, why we made him do things in a certain order, why most of the rules in his life exist. He understood why we made him do things he hated like go to Sunday school once a week, do school subjects that he didn’t like, do certain exercises every day. It was like this big lightbulb went off in his head.
“You’re preparing me for the real world, not disability world.”
“We are. But we know it’s not an easy path. It’s really hard on you.”
“Mommy?”
“Yeah?”
“Thank you. It’s what I want too. I’m so sorry I’ve been so mean to you guys when you were just pushing me to do my best, because you believed I could.”
And I grabbed a tissue.
Laura says
May 23, 2016 at 1:40 pmThis made me want to cry :’) Praying for y’all!
Dawn says
May 23, 2016 at 1:47 pmWhat an amazing moment with your boy! I’m sure more hard times will come, but that Thank You from David is a great moment.
How did you start computer programming/what are you using for that?
Gretchen says
May 23, 2016 at 1:53 pmRight now we are working through a free website online called Khan Academy. It’s very well done.
Elizabeth says
May 23, 2016 at 2:06 pmMy husband writes computer code for a living and loves it. He’s also extremely bright in math and has a great memory for facts he reads. You son clearly has many options and helping him now figure out what helps him (including physical work) is important. Helping him figure out how to do things so he can achieve his goals is great. And not letting him identify himself primarily by his disablties is super important, as those are not what defines or makes him. What he does with what he is given in life, that’s what will count. We all, in the end, have real limitations and learning how to live within in them and build a meaningful life that has God first and courage and bravery and determination in there, will produce a life that can have beauty, dignity and be able to honour and serve God and others. Keep at it, I appreciate how much you try to be a good Mother to your children. God bless you!
Rebekah says
May 23, 2016 at 8:31 pmI need a tissue, too!
Neither of my sons has an disability and yet I think your story resonates with all parents who are trying to teach their kids life lessons: responsibility, hard work, integrity, strengths, weaknesses, etc.
I am so excited for this breakthrough and light-bulb moment you had with David yesterday. Praying that you continue to see the fruit of this in his life, actions and attitude.
God has created him for a great purpose as his child!
Thanks so much for sharing.
emi love says
May 23, 2016 at 11:45 pm::BIG HUGS:: this post made my day. He is so lucky to have someone cheering him on and making it possible for him to be part of the ‘real world’ some day.
Sabriena says
May 24, 2016 at 6:29 pmAwe! What a precious moment to be able to share with your son. Or I guess I should say moments. 🙂 That sounds like a lot of stuff he has to deal with! Is it all wrapped up as one thing with side effects? Or are these all totally separate issues that would have been just as likely to be distributed throughout the family? Obviously, I don’t know hardly anything about these disabilities. I hope my ignorance isn’t offensive.
Gretchen says
May 24, 2016 at 6:36 pmAw… not offensive at all. I think it depends on which of our doctors you talk to! We started out going from specialist to specialist, but in my gut I believe that there is a core cause to all of this. We found a doctor that would do some big-picture testing. That’s when a lot of lightbulbs went off. When we got his celiac numbers back, and found out that he wasn’t absorbing nutrients properly, we started to put together a theory that the nutrient deficiencies were causing his alopecia. (No one knows what causes alopecia. It’s just a lot of theories.) When we started putting him on a protocol to heal his small intestine and get it absorbing nutrients properly, all of a sudden his ADHD and SPD got much better. It’s still there, but the violent side of it has left. Also, his reading started getting easier, and his comprehension got deeper. Once we started the diet protocol for the alopecia, all of the neurological things started improving. So from my view, I think they are related. Can all of this be totally healed? I don’t know. But I know that we are learning how to manage it, and that is at least a step in the right direction!
Sabriena says
May 25, 2016 at 12:19 pmThat makes sense. And it sounds like he has a good mind about it all, anyway. I thought it was neat that upon first learning about the extent of his disabilities, he didn’t become overwhelmed and want to try an easier way. It just seemed really cool that he felt like you guys made the right decision, and that’s what he wants to keep on doing. I like that you guys try to find ways to work with what God has granted you, rather than just throw up your hands and say there’s no point in trying. And it is also nice that you have learned some things like the diet, that can actually make it all easier.
By the way, even though I didn’t know about all this stuff either, then when I was reading your post about why you chose to give him the woodpile job, I was really impressed with the well-thought out parenting you guys provide him. You and Knut are definitely going to raise some very good men and women.
Mom says
May 24, 2016 at 7:40 pmYou have such a special relationship with him as well. He trusts you so much and listens to you more than anyone else. This is a lot for a 10 year old to absorb, but he wants to do it. It reminds me of when Paul was discipling Timothy and said in II Timothy 2:3, “Join me in suffering like a good soldier of Christ Jesus.” or I Timothy 6:12, “Fight the good fight for the Christian faith. Take hold of everlasting life to which you were called and about which you made a good testimony in front of many witnesses.” David has the opportunity to be a special witness for Jesus by how he responds to the job Jesus has given him to do. Jesus is also pouring out his grace on David and we are all being enriched when we see this grace lived out in David’s life. I’m so glad God gave David such wonderful parents as you an Knut!
Nicky says
May 24, 2016 at 9:51 pmCongratulations !
You made the best decision to tell him about himself. It sounds as if you picked just the right ime.
kharking says
May 26, 2016 at 11:26 pmThis is so encouraging to read as the parent of one (and probably two) special needs kids. My older son is high-functioning ASD and a lot of the things that David struggles with sound very familiar. The woodpile post was amusing because our son, who is 4, gets to build things in the backyard with real bricks because of the heavy work benefits. He would probably enjoy the kind of work available on more land but we do the best we can with a suburban backyard. We haven’t talked to him or his siblings about his diagnosis and I suspect that we are a few years away from that but we deal with the effects of it every day and that is hard to miss. It is hard, especially with several other little people, so seeing the heart of a family that is a few years ahead of us is like seeing signposts on the road.
I have been enjoying reading back through your archives and just got to the one just over four years ago when you were suspecting that David had these issues but that you weren’t ready to pursue a diagnostic label. I don’t remember what made you change your mind but it is interesting to see the way that having a label actually helps him understand himself at this point, rather than being limiting. We have gone back and forth on whether our older daughter would benefit from having a developmental psych evaluation as well. After pulling her from school halfway through her kindergarten year to homeschool full time due to problems that she was having there and at home, we thought that perhaps the educational tailoring and shepherding that I can do here was enough. However, an ongoing set of problems incline us to think that having a better idea of what she is up against will help her in the long term and potentially help us in the short term.
Thank you for sharing. I’d be a regular commenter if my blog reading time didn’t also coincide nearly entirely with nursing time but this one (and this one http://www.hesowsandshesews.com/2016/05/when-you-have-no-support.html, to be honest) struck too deeply to let go by.
Gretchen says
May 27, 2016 at 2:20 amI love it when people comment! So thank you for that. We did resist giving him a label for a long time. It definitely was a process for us. I didn’t write at all about why we decided to get him officially diagnosed. Without crossing some privacy boundaries with my family, I will say that I reached my limit with handling him. He was getting so big. The other kids weren’t getting everything they needed from me. I got to the point where I said, “I don’t care if we have to drug him, I cannot live like this anymore.” I didn’t want to just go into the pediatrician and get a quick prescription, though. I wanted him to see a child psychologist and MAKE SURE we ran all the tests to know what we were dealing with. We met with her lots of times. She was a great doctor, and gave us a ton of options, and was extremely encouraging. As we were praying and debating about which route to go, David started losing his hair. We decided to put off making a decision about a prescription until we knew what we were dealing with on the odd-disease front. That lead to much more invasive and intensive tests, which showed us that his small intestine was starting to fall apart. So then we decided to deal with that first without throwing a different prescription in the mix. His ADHD and SPD got much more manageable as he went on his new diet. It’s night and day different…but it’s still there. The one thing the psychologist said we did absolutely right was homeschooling him. She praised us so much for that, because in her words, he was basically getting all-day therapy and learning at much greater strides than most kids with his issues have, and is getting the intense social training that is not very easy to get in the schools without someone next to him explaining things. He would just be confused and upset most of the time there. Most of her report was an enthusiastic “Keep doing what you’re doing!!! We can give you some more ideas but his situation is ideal for his issues!!” Which was nice to hear but…we came to her because we were at the end of our rope so we were less enthusiastic. We boiled down that the main issue that was bothering me was that 50% of my time was going to David, and 50% of my time was going to my other 4 kids. It wasn’t fair, and my other kids started acting out because of it. That’s when it became a problem.
Anyway, we are all on a journey, aren’t we? I hope that I can keep being an encouragement to you, and reminding you (and myself!!) that there is grace, that if we could fulfill our kids’ every need, than they would never need God. We’ve had some of the deepest, most intense conversations with our kids because of this. I hate it sometimes, but other times I’m so grateful. I’ll stop now..;)
Anne says
May 27, 2016 at 10:42 pmGretchen, Your way of managing David’s situation, especially including the spiritual aspects, is an inspiration, as is your beautiful writing. He is so fortunate to be a part of your family. I’m the parent of kids with similar problems, and we used some of the same techniques, diet, etc, to manage the issues. However, one of our kids began showing more extreme symptoms, and eventually our doctor referred us to someone whose treatments actually healed our kids.
I would be happy to share more information if you are interested. It might be helpful to know that you have another option you may not have heard of. Wishing you and your family the best.
Robin C says
May 31, 2016 at 12:07 amThis is amazing. Thank you for doing the hard work with your son. I’m married to a guy with ADHD and ODD and he is, quite honestly, the smartest, kindest, hardest working soul I know. His issues were a little different than your son’s but he and I are making a beautiful life (and one for our three-almost-four babies) in the real world. I think your dude’s wife will rise up and call you blessed one day. (That’s certainly how I feel about my MIL.)
Gretchen says
May 31, 2016 at 3:26 amOh my. Your comment brought tears to my eyes. Thank you so much for your words of encouragement.