Today, I am truly grateful. When I am able to sit and truly reflect on how far we have come and all that we have been through, I give thanks for today. We are quietly approaching Joey’s one year anniversary of being seizure free. His 2nd and last round of seizures was on October 19th of last year.
September 3rd, 2016, marked the one year anniversary of when Joey’s seizures first began.
I was also reminded of this anniversary when I attended this year’s start-of-school professional development day. Last year, I had to be summoned out of that very same day of meetings by my new superintendent, with the news that my 2 year old son was in an ambulance waiting to go to the hospital, following a seizure. It was the worst day Joe and I have ever experienced together, and probably the worst in both of our lives.
Joey went on to have 3 more seizures that day at Albany Med. Then, unmedicated for the 6 weeks that followed, he had another round of 4 seizures on October 19, on an otherwise normal Monday night. Following that round of seizures, Joey’s doctor’s put him on Keppra, an anti-seizure medication that he must take twice day indefinitely.
Thankfully, since that day, other than one small incidence of twitching type seizures with a ridiculously high fever in February, Joey has been seizure free since October.
Every single day, as I lay down to go to sleep, I say thank you to God for another day with no seizures. It has given me an appreciation for normal days, more than I could have ever imagined or wished for.
I’ve written often about how our life has been full of ups and downs since Joey’s diagnosis almost two years ago. I have so many people that are curious about what life is like for Joey. I would say, “with a child with autism” but every child is so drastically different that I can only speak for my child and what we experience. This could be nothing like the friend or family member you know with autism. But this is our reality.
5:30-6:30: Joey wakes up. He sleeps in a big boy bed now! Actually since last March. The room is practically empty, except for his mattress, pillow and blankets. We had to totally baby-proof it since it isn’t safe for him, even at this age, to be left alone with anything that he could get into. The window, video monitor, lamp, etc. are all behind the baby gate, his two closet doors have to be locked shut. Now that cold weather has arrived and we’ve had the heat on a couple of times, we’ve had to find a way to keep him away from he heater all along the wall, since he will put his hands in even though it is hot and could easily burn himself. We attach a huge baby gate from one side of the room to the other. He does spend a lot of time calming himself by strumming his fingers on the air conditioning vent that you can see in the picture below. We did have sheets and a comforter on his bed, but he would take them off every night and play with them, so for a while he just had a mattress. Just recently we bought some straps that attach under his bed in order to keep his sheets on at night, which has been very helpful. It is a huge victory that he is in his bed and will go to bed independently. That is something we are grateful for everyday as well, since many children with autism have a lot of sleep difficulties, but that is not Joey.
7:00 – Joey has breakfast with his sister. He has a special chair that we bought for him since he is not able to sit independently on a big chair, but we didn’t want him to feel like he was in a high chair. He is a mix between a picky eater and not. He likes cheerios, pancakes, waffles, toast, bagels, fruit and milk for breakfast (don’t worry – not all in one day!). During his breakfast, he has his iPad on to watch Gemiini videos. This is a discrete video modeling (DVM) program that is a subscription service we pay for each month to add to his speech therapy. The videos model how to say words, how to talk conversationally, and demonstrates many receptive language concepts that just add to his overall general knowledge.
Between 8 and noon – Joey is basically with his therapists during this time. Almost every morning, Monday through Friday, Joey has a mix of speech therapy (2 x 30 which means 2 times a week for 30 minutes), special education itinerant services (3 x 60), occupational therapy (1 x 30 about to increase to 2 x 30) and then his Applied Behavior Analysis (ABA) therapy for 13-15 hours each week. He also qualified for physical therapy but we haven’t found a therapist yet that we were comfortable with so we discontinued services for the time being. During this time, his ABA therapist will put him on the potty every so often as we continuously are working to potty train him. He has gone through a rough patch recently (when he was sick) where he was holding it all day, which is really frustrating, and he still has pee accidents from time to time. But for the most part, for the last six months, he has been fairly consistent with peeing on the potty, which we are grateful for. (Sidenote- I’m going to do a completely separate post soon all about what he does during an ABA session because that is truly fascinating. There are so many incorrect myths and misunderstandings about what ABA is and what his therapist does. But if you saw what our therapist and her BCBA supervisor do with Joey, you’d never question ABA for one second. It is truly a miracle!!).
His ABA therapist, Jess, has also started trying to get him out into the community more to expose him to new experiences and prepare him for school. We have practiced taking him to the local diner near our house (where we order ahead and try to be prepared in advance for anything that could happen) which was a success and the owner and waitresses were incredibly understanding and accommodating in regards to anything we asked for. The kindness of strangers is something that always makes me tear up in gratitude.
Jess has been having my 2 year old niece, Cece, come over to do “school” with Joey once a week to have Joey practice following a schedule. Something Jess might do with them is to put four task cards (PECS) for them to do a card and sets the timer for them to complete the first task. The two of them cutely do the first task together (blocks, coloring, or something similar) until the timer goes off. Then they clean up and go on to the next task. It helps give Joey some peer interaction, helps him to realize that he doesn’t always get to choose the activity and the duration of it, and helps him to practice transitioning from one thing to the next. It is super adorable and both Joey and Cece love it. Cece tells my mom (who watches her during the week) that she wants to come over for “Joey’s school”.
Jess also wanted to try taking him to the local story hour at one of the public libraries nearby. We arrange it so that my mom and Cece go at the same time which helps him to be more comfortable with more familiar faces. He’s been a few times now and they’ve all said that Joey has done great! He’s participated in the retelling of the Brown Bear, Brown Bear story by holding up a goldfish at the right time, he sat and listened to most of story, and he played with the other kids during play time. I was sad to miss it, but so proud to hear all of the wonderful stories of things he had been able to do!
12:00 – Joey eats his lunch. Again – not super outrageous with the variety, but a generally healthy eater as far as children with autism go. On any given day, he eats cashews, almonds, raisins, pretzels, pb&j sandwiches, carrots, broccoli, and fruit like berries, apples, or bananas. He tends to be a light eater at lunch since he is usually exhausted from working hard all morning and ready for bed. He’ll usually request his iPad by saying “I-pad” fairly well…but that’s not surprising, considering it is a pretty big motivator! He now sings along to and acts out many of the songs he watches on youtube (then “Super Simple Songs” videos are his favorite!) filling in as many of the words that he can.
12:45 – 3:30 – Joey’s naptime. This is one of the biggest reasons that we haven’t sent him to a specialized preschool yet – he still takes a 2-3 hour nap most days! He is such a sleeper and will request his nap by saying, “bed” or sometimes even his version of “ty – erd”.
Even though he only turned 3 last February, when a child with a disability turns 3, they are able to start preschool if they qualify for services…which he obviously does. He actually was eligible to start preschool in January when he was still 2, but we just don’t feel like he is the right fit for preschool at the moment. His therapist also mentioned that right now, he would be one of the top role models in the class that he would be in. Even though that sounds wonderful, that is not what we want. We want him to have other role models to watch and observe for language and behavior in order for him to grow. It would be at least an hour drive one way as well, which just blows my mind that he would have to do that amount of time in a vehicle each day. When the time comes where we feel we are ready for preschool, that will be the reality. But he’s still too young…and the intensive one on one therapies he is getting at home are far too valuable for us to give up at this point.
3:30 – 4:00 – Joey wakes up. This is generally a touch and go time…where we wait to see what kind of mood will greet us when we open that bedroom door. 6 out of the last 8 weeks or so, Joey’s moods have been amazing and he has been so much fun that we run up and get him excitedly from nap when we hear him wake up. When he is going through a rough patch, however, it is sometimes a daunting experience to know that going up to get him means a few hours of struggling is ahead of us. I’ve written before about the tough days. I’ll focus for now on the positive days.
When Joey comes down from nap, we have to help him down our stairs, step by step. He can go up independently, but he still needs a great deal of assistance on our fairly steep stairs to come down (though my friends know and make fun of me, I’m a nervous wreck with stairs so we don’t even let him go up alone, even though he has snuck away twice and proven he completely can do it alone!). He still doesn’t quite understand the concept of fear.
This is also our playtime. An improvement over the last few months is that there is somewhat less repetitive play with his toys and a bit more functional play. And I should have prefaced that statement with the fact that he usually plays appropriately with toys with his therapists…it is when he is left to play independently that the repetitiveness comes out. But nevertheless, this has improved tremendously and we are very grateful for that. He likes a lot of toys he can push (e.g. his snowblower or bubble mower) or pull (dog on wheels with a leash, etc.). He loves his Sit and Spin toy and it is crazy how fast he can make himself go. And he loves to play with his little indoor basketball hoop and shoot, pass and score!
If we are outdoors, he has learned how to kick a ball so he loves to do that now. He loves to run around our yard…and ten acres seems like it was meant for our Joey! He loves, loves, loves to swing on our swing set!! He is practicing on all three swings that we have…and what I love about Jess is that she doesn’t just put him in the toddler swing. She has him practice on the big kid swing…which is not something I would have even attempted at this point, but I am so grateful she does! She always knows when to push him (literally and figuratively! Lol) beyond what I think is even remotely possible. I’m always so grateful she sees the potential in him sometimes before Joe and I do!
5:00 – dinner – Joey will eat almost no protein lol. He eats noodles, brown rice, green beans, cheese sticks, and an assortment of food that he has had throughout the day as well. We used to battle with Caleigh over food and trying new things and eating what we gave her…and then the autism diagnosis came almost 2 years ago, and we decided that the food battle was one we were going to cease to fight any longer. I don’t really care what she eats as long as it is balanced and healthy. I figure, I sometimes make different foods for myself or Joe anyway, since we eat pretty simple and healthy so there are not very elaborate dinners happening anymore, which I am fine with.
We usually have some more play time after dinner until the bedtime routine starts at around 6:30. Joe will usually give Joey a bath, which is his absolute favorite thing in the world. He does have that one typical autistic trait – the kid loves water! After bath, we brush his teeth with him and help him get dressed in a nighttime diaper and jimmies. We are trying to get him to help with dressing, since a typical 3 year old would be doing that by now. He is good about pulling on his pants if we help get them on his feet and we need to assist with putting the shirt over his head still.
MY absolute favorite part of the day with Joey is taking him up to bed. He will usually request, “chair” very clearly and will do the sign for “book,” which means he wants to go read books in the chair outside his bedroom. He has had many favorites over the last year, but currently he is into “Head to Toe” by Eric Carle and “Peek-a-Who” which is another simple board book. He will help read them by saying the words he knows and acting out the parts that he can. Reading books and snuggling in the chair always brings out the best in Joey…we see his best moods and happy, vocal interactions. It’s truly an awesome time.
7:00 – Bedtime – Joey is a great sleeper and we know we are lucky for that! He will fall asleep fairly quickly (especially now that it is getting dark so much earlier) and will sleep from about 7:15 until about 6:00-6:30 in the morning. Joe and I are fairly early risers, so we appreciate the extra quiet, alone time we get sans kids in the evening, since obviously they do not sleep in!!
Caleigh and Joey’s relationship continues to grow…and despite Joe and I sometimes getting frustrated easily on a bad day, she always remains a picture of calm and forgiveness. I can tear up just thinking about it. She’ll be the first one to come over and remind me that, “Mommy, Joey can’t help it. He doesn’t mean it, Mommy,” and will always try to comfort him or bring him his favorite Rainbow Bear.
Her level of understanding and awareness blows me away sometimes for a 6 year old. I noticed a man at Price Chopper last weekend when I was shopping with Caleigh. I could tell he had some type of disability, and I saw Caleigh staring at him, as we kept meeting up with him, aisle after aisle.
When we were leaving, I thought about how I could make this a learning opportunity for her, since I wasn’t sure what her thoughts were about this man. My intention was to remind her to treat all people with kindness and understanding, because we would want strangers to treat Joey that way if they saw him acting differently in public. So I mentioned how I had noticed her looking at the man, and I asked her if she had any questions. She responded back with, “Ya mom, I was thinking, I think he may have autism like Jojo. I noticed he was using some signing with his mom to talk and he couldn’t really use a lot of words. Like I saw him rub his belly and then point to the cheese, meaning he probably really likes to eat cheese. So it reminded me a lot of Joey.”
And just like that, I was grateful for Joey’s autism again. I realized that my own daughter had no thought in her head that the man had been “weird” or different, as I had ignorantly assumed she might. Instead, she had noticed the similarities he had with her own brother. Period. No judgement. Her compassion and perspective is definitely one of the blessings of having a brother with autism. She is fierce and can be a know-it-all and can be stubborn. And I am so unbelievably proud she is mine. God has blessed us with these two. That is for certain.