It's hard to explain what it's even like living with it. It looks kindof like this:
Bouncing off the walls for a majority of the day.
Crashing into the couch.
Tunneling under the couch cushions.
Jumping off anywhere he could get his feet on- the couch, the chairs, his bed, the top of the couch,
Acting over the top with excitement. It was like his little body couldn't physically contain the excitement and he was all over the place.
No comprehension of personal space.
Instant anxiety over things not working out a certain way.
All or nothing mentality over so many things.
Zero focus on doing tasks or carrying on a conversation. (Literally 3 seconds later, distracted.)
Freaking out over tiny things- a sock seam out of place. Itchy pants (that did not feel itchy to me), too many noises all at once (like singing at church), giving up almost immediately with tasks that had lots of pieces or details (sweeping the floor, picking up the container of Legos that were all dumped out), being in his happy place by things being dumped out all over creation, freaking out when it was time for an activity to end, even with a time warning ( no comprehension of tomorrow or the next activity), no connection between actions and appropriateness (i.e. coloring on the walls long past the age most kids do)- these are all just a few examples.
It felt like having 3-5 kids at home, all in one kiddo. It was so incredibly frustrating having no idea what to do to help him, because we had no idea what exactly was going on.
We started by talking to his pediatrician about the different things we were seeing. Andrew tested high for ADHD but, his doctor thought it might be more helpful to try therapy first. He referred us to the hospital, but the waiting list was really long, so we found another place. Two months later and boom- we were up! He started going every single week. It has been nothing short of amazing. They were able to tell us that what he struggles with is sensory processing disorder. They made goals for him and worked through play, Andrew loves it. He's actually graduated from once a week to every other week now.
Our insurance happens to cover therapy, If yours does not, see if you can get a doctor's recommend to. And, if not, there are tons of ideas online. A few of my favorite resources are Lemon Lime Adventures, my Pinterest board, and AdditudeMag.
So, what got better, aside from therapy?
Our expectations. We didn't get rid of them. I mean, while there are challenges for Andrew, we still want him to learn how to be a good student and someday responsible at a job and in life. Giving him a crutch won't help. However, working with him rather than against him has helped tremendously. Hearing his therapist say that it was normal for him to seek crashing, spinning, tunneling and weight on top of him was really helpful. It was like an "ok" to let him do what he needs to (safely and in reason).
Being ok with saying no- Whether to activities he struggles with (one-on-one playdates when he was younger. Fun activities that were too short. Things he could not have sat still for, etc). Getting to really know Andrew better and finding where his limits were was part of healing and part of growth. We as a society are so into pleasing others and not being a bother, but if you think about it, boundaries help give us rest and a break. They give us space, and space is good.
Saying yes more often. It's hard to say no so often, but reframing it as something he could do helped. "How about this or this." Magic words. Giving a no and following it up with a yes was huge for him. Sometimes he just needed something he could wrap his mind around.
Realizing the difference in a meltdown and a tantrum. A tantrum is what happens when a kid does not get what they want. A meltdown is when a kid is having a hard time and not understanding what is going on. Sometimes it's hard to tell. Sometimes a tantrum turns into a meltdown. We could tell something was wrong when Andrew was freaking out and not processing anything. There were sounds he would make that denoted panic. He did not understand. He was not giving us a hard time; he was having a hard time. We talked to his therapist and she explained that a)he is very visual and needs visual help and cues and b) he needs a clear idea of the activity. Great example: Telling him to go clean his room. Cue freak out and anxiety. He literally thought it would take hours. Telling him to go pick up 20 or 30 toys (or one kind of toy) and then he could go to the park. Cue listening. If it was a really big mess, I would offer to help a little. Knowing what was coming next was the key. It still is the key. (Which makes sense. He is always asking that!) Andrew does a lot better when we give him a definitive timeframe. Rather than saying, "No you can't do that right now." he needs to know when he can do it. "Not right now but you can play in five minutes (or this afternoon, or after we get back from doing this.) It helps ease the anxiety and thought that he is never ever going to get to do it again.
Tying in his action to realistic logical consequences. Both positive and negative. He needs them to really tie in and in a time sensitive manner. Sometimes he will stall bedtime. I'll tell him that for every minute he stays up, he will lose a minute (or sometimes 2) of bedtime. On a positive note, I will tell him that if he can do x job, he can earn x privilege. He loves that. (Great way to get extra cleaning done!) To try and encourage time off the screen, we got three guinea pigs. He is in love. It works, and it's been a good way to teach responsibility! (He has to feed them every morning or no screen time after school).
We also give him points to redeem for making good choices like family time or being outside for a long time. He can redeem those points for ice cream or another activity.
Having good visuals and examples for time. He can definitely be like dory with his distraction level. His therapist printed off and laminated pictures of each thing he needs to do (and, we broke it down to help him. Get dressed, and get socks and shoes on are two separate ones). He has a laminated sheet of colored paper with velcro strips on it. It's his job to move the squares to the "done" spot each morning before school. We don't allow screen time before school because his brain turns into "rock brain" (as his therapist calls it) and he has a hard time focusing. Telling him (or showing with an app) of how much time is left (several times) helps for ending an activity.
Choosing food that fuels his brain. High protein, high quality fats (fresh ground peanut or almond butter, butter, avocados, etc), omega oils, low sugar, lots of water, no juice or fruit snacks, complex grains, and lots of fresh fruits and vegetables. In the summer we like to grow veggies in little planters and visit the Farmers Market. He loves having a part in picking out and prepping meals. Nutrition makes a big difference. He does better in school. Try thinking lunch rather than breakfast for good foods.
Picking a place where he would thrive. I loved doing homeschool. It was wonderful. There are so many cool options, but I hit my limit with what I could do compared to what Andrew needed. We enrolled him in a Waldorf school for half of first grade. He excelled. If we ever have the funds again, I would love to send him back. For second grade, we decided to enroll him in public school. That was a hard choice. I knew he was outside the box and didn't know how he would do. Well, I am glad to say, he is thriving. We have kept in close contact with his teacher and are really doing well. So far he doesn't have a 504 or IEP plan, but we may look into that next year. We've put in an application for the Highly Capable program our school has (Pray he can get in!) so I'm hoping that works out for next year. There are lots of options, and I am thankful!
Prayer and calming music. It really helps set the stage for a calmer day. Praying ahead of time and in the moment have helped calm our hearts and his. Our faith has sure grown as a result. It's been encouraging to see. Sometimes there are answers but know that that is ok! You can still love well in the in-between.
These are just a few things that have helped us. I am so thankful for everyone I have met along the way by opening up. Sometimes I feel kindof silly- like maybe this really isn't a big deal, but the hard days come, and I am so thankful I decided to be brave enough to say something. Not everyone understands, but the important ones do, and really at the end of the day, God loves him and God loves me. No one else's opinion needs to matter.
If I could tell you anything it is this- You have an amazing child! Seriously! For all the hard things, there are so many wonderful ones! If there are things that just don't seem normal, seek a doctor's opinion. There are some fantastic resources! Also- you are an amazing parent. It is hard work! You're doing a great job (and know way more than you think you do!) You are their best ally. Keep your chin up. It really does get better.