A Lesson Learned

We are incredibly blessed, lucky and super grateful that Joey is an awesome sleeper (unlike many kids with autism) and will not take that for granted. 

I realize this 100%. 

We are also incredibly lucky that over the last six months, the mind-blowing, soul-crushing, all day meltdowns that we experienced last year for approximately 10 months straight, have decreased significantly in frequency as well as intensity.

That’s actually putting it mildly. They were so bad for so long, that we have been holding our breath for the last six months, afraid to actually enjoy a “normal” life again. Afraid to jinx it. Afraid to go back to the dark place we were in last year. 

But we also remind ourselves to try to be in the moment and enjoy it…while it’s happening. Enjoy the giggles, the playfulness, the increase in communication. Enjoy having our sweet boy back again. Because it is has been truly awesome to have only one or two minor meltdowns a day. 

This month, my parents have traveled to Virginia to be with my sister and her family as they welcomed my newest nephew, Jack, into the world.

For the last 8 years, my parents have cared for my 92 year old grandfather in their home, making it challenging to go very many places together. But they are amazing and always go above and beyond, so they’ll be there for a month.

In their absence, I am staying at their house to take care of Poppa for 4 weeks. 

Our hope was for my whole family to stay with me. Normally, this would not be an issue. But for Joey, this is no easy task.
We have worked tirelessly for the last week and a half to transition him to living with us at my parents’ house while they are gone, so that we can all be together. We baby-proofed a whole bedroom here, had his ABA therapist help transition him during the day, and brought all of his favorite toys and things to make him comfortable. 

However, after many failed attempts at transitioning, many night-wakings, many bad moods and head-banging meltdowns, we are throwing in the towel. 

We want him to be comfortable at my parents’ house. 

But acceptance of our reality is the key to our happiness…and autism (and the subsequent meltdowns that Joey has struggled with) has taught us that we cannot fit a square peg into a round hole. 


He’s happy and content at home. He sleeps all night at home. He melts down less at home. And we realize how incredibly lucky we are that we have that. 

So we have a new plan. Now we split up for the next 2 1/2 weeks and divide and conquer. Caleigh and I will stay with Poppa and Joe and Joey will stay at home.


It’s not ideal. 

Things could always be easier. But you know what? It could always be tougher, too. 

We are lucky that he loves our home and it makes him so happy to be there. And his happiness is all that matters. 

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Where We Are

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.

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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!

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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.

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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.

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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.

A 50/50 Life

Lately I am finding life to be in one of two extremes.

Half the time, I am feeling so grateful for the wonderful life that I am blessed enough to get to live, that I couldn’t possibly thank God enough. My husband is so incredibly supportive, caring, and strong. My children are full of love and strength and determination. We are all healthy and happy and surrounded by our supportive families.

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The other half of the time, however, I feel complete and utter desperation and hopelessness. To say we are overwhelmed does not even begin to describe our situation.

In the autism community, it is very common to feel very proud of the individual’s autistic identity. Many people love autism and the uniqueness that it brings to an individual.

Currently, I hate Joey’s autism. There, I said it.

I love my child. I love him with every fiber of my being. We cheer for him and feel such pride at every single turn; every tiny accomplishment.

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But I hate the autism.

I hate that it makes him unable to communicate what he needs and what he wants.

I hate that he can’t tell us what hurts.

I hate that it makes him uncomfortable and overstimulated.

I hate that it is quite likely the reason that he has seizures and has epilepsy.

I hate that because he is on his seizure medication, Keppra, that he has violent mood swings.

I hate that it makes him slam his head against our hard wood floor as hard as he can so that he has bruises across his forehead.

I hate that it makes him hit my husband and I 50 times in a row in the face.

I hate that it makes him head butt us as hard as he possibly can, when he is flailing, where it takes my breath away and makes me tear up.

I hate that it makes him need to do things repetitively and if those repetitions need to be interrupted in order to perform some simple activity of daily living, that it can bring on a meltdown.

I hate that nothing works sometimes – not if we try to pre-set him, not even if we warn him of upcoming transitions, not if we try to ignore the negative behaviors to avoid reinforcing them, not if we catch him being good and positively reinforce – NOTHING.

I hate that sometimes what worked perfectly yesterday can be the same exact thing that will bring on a meltdown today.

I hate that it makes him lash out at me, completely out of the blue, when he is snuggling on my shoulder.

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I hate that I now cringe when he raises his hands, because my first instinct is that I am bracing to get hit in the face.

I hate the isolation and disconnect we feel from the typical families around us, including our own families.

I hate that my heart hurts because I constantly feel as though Caleigh is not getting the attention from us that she deserves.

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I hate that I have to worry about my job and the potential enemies I may make as I fight tooth and nail within my own school system someday to get the absolute best for my child.

I hate that we spend whole days crying, unsure how long we can handle life like this.

I hate that it makes me acutely aware of every, single weakness that I have and where I am not strong.
I hate that it makes me want and need a break from my own child.

I hate that it makes me worry about him being taken advantage of when he is an adult, when Joe and I are gone and unable to protect him.

 

To be fair, we try to look at the bright side of autism, too.

I love that it has made me more grateful for the little things.

I love that it has made my sweet daughter into a kind and gentle, old soul, before she has hit her sixth birthday.

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I love that my children don’t fight, like typical brothers and sisters.

I love that Caleigh would literally fight for him, if someone were to hurt him in any way.

I love that it has brought Joe and I closer together, even in our struggles.

I love that it has brought out a sensitive and patient calmness in my own father, who has learned how to let so much go that he may not have in the past, without me even asking…which is something Joe and I have both noticed, but have never even mentioned.

I love that our families will help us out whenever we really need it.

I love that angels sent from God have been brought into our lives, in the form of Joey’s therapists, who I witness working miracles each day.

I love that, despite the fact that many moms fear their son leaving and being closer to his wife’s family in adulthood, we’ll always have Joey with us and be close.

I love that Caleigh wants to build a house on our property when she is all grown up, to be close to the three of us, too (we laugh and tell her we are holding her to that!).

I love that is has given Joey an intense love for music.

I love that Joey is still able to express his love for us, even without words, and stares into my eyes so deeply.

I love that Caleigh says that her brother is her best friend.

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In the dark moments, I have to remember that ‘this too shall pass’.

Not the autism. That is with us forever. And I don’t hate it everyday. Just today.

But the desperation and hopelessness. It can go as quickly as it came. In fact, don’t let the door hit ya on the way out.

Weakness and Strength

Like everyone, my family has dealt with a lot of sickness this winter. We’ve had stomach bug 3 times, high fevers of 104 lasting for days on end with cold and cough 2 different times, and countless runny noses.

This last time, however, brought about a new wrinkle in our lives. During Joey’s 2nd bout of high fever and flu-like symptoms, he had a night where his fever was over 103 even with ibuprofen. That night, he woke at 8 pm and was screaming as if in pain. Usually if he cries in his sleep, he can quickly put himself back to sleep in a matter of minutes.

This cry sounded markedly different.

I went in, grabbed him from his bed, and he practically jumped into my arms and gripped me as tightly as he could. As I was holding him, I felt a series of what I can only describe as electric shocks jolting his body. His body would suddenly tighten for a brief moment in a sudden jerk, causing him to scream out in pain and fear. This happened every 5-10 seconds for about a minute.

It freaked me out.

His tonic-clonic seizures (formerly described as grand-mal) that he had on two prior occasions, resulting in two overnight hospital stays at Albany Med, were nothing like this. During those seizures, he would stiffen and shake, his eyes would roll back in his head, and he would make a very frightening gurgling sound…but I was always reassured by the fact that he was out of it and could not feel a thing.

During these new seizures, every time another jerk happened to his body, he would scream as if being tasered and grip his nails into my body…the crying and screaming escalating and becoming more frantic and filled with fear. It was hell.

I didn’t know what to do. I didn’t know how to make the pain stop for him. So I panicked.

I ran down the stairs with him and handed him to Joe. I ran around like a crazy person, trying to call my mom, the nurse helpline, our neurologist…whoever I could call for help so that I didn’t have to helplessly hold my boy any longer. I started to feel my chest tightening and my breathing becoming more difficult…what I can only imagine must be the start of a panic or anxiety attack.

I felt indescribably weak.

The neurologist told us ways to try to bring his fever down…and that if it happened again to give him the emergency seizure medication which would help him sleep.

I laid down with him in his big boy bed and he gripped me tightly, with fear in his eyes. He was exhausted and out of it, yet was having trouble falling asleep. I put on some lullaby music and he snuggled on my chest. A few times, he started to fall asleep and then his body would jerk him awake again…a feeling I was familiar with and knew was normal, but was so remarkably similar to the jerks he had experienced earlier that it made me nervous there was more to come.

Eventually he and I both fell asleep by about 10 pm.

At around midnight, I was awoken by Joey’s cries. He was laying on top of me, with his arms around my neck, so it was hard for me to sit up with him. I held him tight and noticed that it was starting again.

This time, what I noticed was a stiffening of his body for a moment of two, followed by the sharp cry of pain and fear that followed. It was less jerky, and more of a tightening of his muscles, though it may have felt different because of the position we were in. I screamed for Joe to come upstairs and by the time he got there, it was just about over.

But again, I was in a panic. I had never heard cries like that before…and it truly scared me.

I passed him to Joe and sat down on the stairs to call the neurologist again, once again finding it a challenge to catch my breath.

He called back again within minutes, even though it was in the middle of the night. I continue to be amazed at the sheer devotion these doctors have for providing the best care to their patients. Dr. Greenblatt told me to give him the emergency seizure medication at this point.

I was crying at this point.

Joe gave him the emergency medication, a pill in the side of his cheek. I was even too scared and panicked to stay around and watch that simple process.

Thank God for my husband.

He is such a source of strength and determination. He is an incredible care giver for the three of us and we are so lucky to have him during these times.

Joey ended up sleeping until early morning…which was probably due to the Kolonopin, which is supposed to knock him out pretty soundly.

Both kids ended up being sick that entire full week, with high fevers for many days. As my stress remained high, due to the fear of high fevers bringing on additional seizures, I had to remind myself that these were still temporary worries. These were acute illnesses that my children would recover from in a matter of days. I’m not worrying from one day to the next about their health. As extreme as that may sound, I have to remind myself of those simple gratitudes in order to remain calm in the moment.

We are still lucky. We are still blessed. I am still grateful.

 

 

 

 

 

 

 

 

 

 

 

Happy birthday

My biggest mistake sometimes is setting expectations waaaay too high and thereby setting myself up to be disappointed. 

Both today, Joey’s actual birthday, and on Saturday, Joey’s party day, I let myself get caught up in having the perfect day. And both days, I subjected myself to a mental meltdown as a result. And it is my fault and my fault alone.

The first guests started arriving at his party on Saturday and he broke down. Started banging his head as hard as he could on the hardwood floor, flailing and arching his back…and fairly quickly it turned into an all out meltdown in the bedroom. Joe and I took turns rocking him as he wailed and hit and kept self-injuring, despite every cringe and tear from me. 

Eventually, after about a half an hour, he calmed down enough for us to go out and rejoin the party and there were so many people, I don’t think anyone even knew we were gone.
One hug and simple, “all ok?” from a friend as I emerged was all it took for me to burst into tears. She ushered me back into my bedroom and hugged me, reassuring me that even typical kids melt down at parties and that it was going to be ok.  

 She was right. The moment passed and he did wonderfully the rest of the party. 

Tonight, I came home in a great mood. I had a great day at work and was feeling really happy and excited to see my birthday boy. 

My expectations were set – dinner, dessert, singing, presents…the typical birthday night.

But I forgot. Joey doesn’t know that it’s a typical birthday night. He doesn’t know about all my plans. 

He knows he doesn’t want dinner, so he throws every bite prepared for him straight to the floor. He knows he wants his brownie NOW and will bang his head on the chair as hard as he can until I give it to him. And many times, I don’t think he has any idea at all why he’s feeling how he’s feeling, so he bangs his head for that reason, too.

I again, am crushed, that things aren’t going as planned. 

I start to cry. Silently and to myself. Or so I think. 

Next thing I know, Caleigh appears at my side, hugging me. “What’s wrong, mama?” “Nothing, honey. I’m ok, I promise.”

She hugs me tighter, but with a distinct gentleness. “Mama, it’s ok, his brain is just different than ours. Remember mom, he doesn’t know, because his brain works a little bit differently than our brains.”

Again, schooled by my daughter. Why does she get it, and I can’t? 

It’s not going to be perfect. And eventually I hope to “get” that it doesn’t need to be. That perfectness doesn’t make memories. That messes and crying and laughing and changed plans can make pretty darn good memories, too.  

  

Just Autism

It is hard to believe that my baby boy will be turning three years old in just 9 days.

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In some ways, it feels like he was just born. And yet, other times, it feels like we have already created a lifetime’s worth of memories.

 

Each day is a new adventure with this kid.

We are currently at 3 months and 11 days since Joey’s last round of seizures. Considering that the first episode and second episode were only 6 weeks apart, this is a huge victory for us.

Some people think I am jinxing things when I talk about how much time has passed without any seizures, but I view it differently. For me, it’s not if, but when. So every day without, is an unmitigated blessing.

I still am emotionally scarred from experiencing both of those days…and I just can’t accept the possibility that we won’t experience it again sometime. Every time I see those pictures of him from the hospital, my eyes instantly fill with tears. Every day to me is a waiting game…waiting to hear my husband’s voice on the other end of the line telling me to “Stay calm, but…

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After the first round of seizures back on September 4th, when I was pulled out of a huge auditorium of people on my first day of school to the news that my son was in an ambulance after having a seizure, I had fooled myself into thinking we had a shot of it being a one time thing.

It’s not necessarily epilepsy…Joey doesn’t necessarily have a life-long seizure disorder that we will have to medicate twice daily and worry about every second of our lives, I thought.

But after the second round of seizures, once again being caught completely by surprise when I had finally let my guard down, I decided to reach a place of acceptance. I had no choice.

Neurologist visits, carrying two kinds of emergency medications in his little backpack everywhere we go;

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that little backpack is so cute, though, right??

giving him Keppra every morning and night; having a specific emergency protocol for what to do for each seizure, written out and ready to go; not being able to have a normal babysitter anymore; dealing with the mood swings that are an unfortunate side effect of Keppra; not feeling comfortable traveling more than an hour from home; carrying my phone with me wherever I go just in case I get a phone call…these things are our reality, like it or not.

But again, I’m not a fool, thinking that it won’t happen again. The memories are still too fresh.

I will say I have definitely found the silver lining.

Autism now seems like no big thang.

Having a child with autism is no doubt frustrating…especially when you want to see your child succeed and not struggle and be happy more than anything.

But the seizures have made me grateful for every day with JUST autism.

Whenever I feel myself getting frustrated with the head banging or the flailing or the crying because I don’t understand what he is trying to tell me (picture the terrible 2’s times 1,000,000), I think about how different our day would be if Joey were to have a seizure RIGHT THEN.

The fear, the worry, the hours spent in a hospital, the lack of sleep that comes packaged up with Joey’s seizures…all of that is SO much harder.

And it truly makes me appreciate every day without.

Plus the snuggles help.

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My whole world

And the fact that, with the help of his ABA therapist, Jess, he now has 250 items that he can identify. Not necessarily with words, but receptively he is able to point to the correct item or go to it to show us his understanding. He is also making such progress on the VB-MAPP assessment for his ABA therapy, that his cognitive abilities are just about in the correct age range. On a typical assessment, he would not be able to score that high probably, but when given a chance to show his understanding in ways that work for him, we can see the intelligence that lies beneath.

As far as our acceptance of whether or not he has autism, that ship sailed long ago and I don’t really care that it’s gone. There is no doubt in my mind that Joey is autistic. I think he has a ton of non-typical traits for a child with autism and definitely does not fit into the mold that people assume he will. He is totally different in so many ways from other children I know with autism. But I have learned that whatever Joey’s mold looks like, autism is part of him.

I am blown away by the knowledge and expertise of the individuals who evaluated him at Yale Child Study Center over a year ago, at only 21 months. They saw the signs long before I did. And more obvious indicators are present now that make it undeniable for us. Had we waited…and Joey had not received his diagnosis from Yale, he would currently be on a long waiting list to receive ABA therapy instead of being one of the first children locally to receive those services through the fairly new NYS insurance mandate.

Many people had told me to just accept the diagnosis…it would be harder on me if I didn’t. But I have no issue with the months I spent in denial. Those were a critical part of my journey and they did Joey no harm. It didn’t change our path and Joey still received every amazing service he would’ve if I had.

I feel like I wrap up each one of these blog posts with my gratitudes…but the reality is that I truly feel that we have so much to be grateful for.

Caleigh and Joey’s relationship continues to get stronger and stronger. She has had a tough year this year in school, dealing with some friendship issues that already in kindergarten make my heart hurt for her. I try to remember that she’s been through a lot and has seen a lot the last few months…so it is natural to assume that she might be dealing with more emotion as a result, too.

But her love for her brother has only grown. She even informed me a few weeks ago that Alexis is not her BFF anymore (gasp!)…but that her brother Joey is (oh, ok…phew.).IMG_2446

She puts so much effort into playing with him (which I can attest can be frustrating at times) and is better at drawing him out of his world better than any of us. There is a natural level of engagement that even I find hard to replicate. Though I do try. The other day I found myself playing a silly game of hide and seek with Joey, taking a cue from Caleigh’s playbook. I felt kinda like an idiot, running and throwing his toy under things to draw him out of the playroom, but lo and behold, he came running after me, completely captivated by the game.

Caleigh is wise beyond her years…and I truly have a lot to learn from her if I just take the time to listen and observe.

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In addition, my relationship with my husband also grows stronger each day, and with each new triumph and heartache we experience together. Joe is such an incredible human being…giving so much to our family each and every day. He makes it seem effortless, running around and playing with the kids, being so involved in all parts of the daily routine. We truly could not be more loved and well cared for.

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So, while these last 3 years have been anything but ordinary or easy…I wouldn’t change a thing.

 

 

 

 

 

 

November 7th

Yesterday came and went, and neither of us made mention of it until late afternoon.

It wasn’t until we had dropped Caleigh and Joey off at my in-laws to head out to dinner that we talked about it at all.

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But we had both been aware of it all day.

November 7th.

This date last year was the day that Joey received his diagnosis.

The day that nothing at all, and everything at once, changed at the same time.

The day that we cried harder, together, than we had ever cried in our lives.

And yet, looking back, it was such a blessing that November 7th happened.

The September prior to Joey’s diagnosis, my mom had messaged me with a link to a NBC nightly news story that Kate Snow had done. She said she had watched it and she felt like, even though Joey didn’t have autism, some of the information in the could maybe be relevant to our situation.

I thanked her and went on my day.

A few days later, Hey, did you ever watch that video?

I told her, no not yet, but assured her I would.

Not long after, she inquired again as to what I’d thought when I watched it.

I didn’t want to have to tell her again that I had ignored her, so I took a few minutes and I watched the news story. I immediately teared up and sent the link to Joe to watch as well.

It was all about the power of early intervention, particularly interventions that were implemented by parents within the home, and the impact it could have on the very youngest of children. This story was about children with autism in particular, and the focus was on an early intervention therapy called the Early Start Denver Model that was started by a woman named Sally Rogers, out of UC Davis in California. She had done research with families utilizing this therapy and had seen incredibly positive results, seemingly reversing some early signs of autism that had been seen in the children who had started the therapy prior to the age of 2. Most therapies are geared towards older children and so this was the first research of its kind with these results that involved intervention with infants through age 2.

Joey was 5 months away from turning 2 at this point, so it hit home for us…this idea that intensive parent-based interventions could make such a huge difference in his progress.

One interesting take-away for both Joe and I, after watching this 3 minute news story, dealt with the parents of the children. Many of them had picked up and moved hundreds of miles to be closer to UC Davis in order to be a part of this study. They had determined that they needed to do whatever it took to help their child. And they dramatically uprooted their lives to do so.

We aren’t doing enough, was the general consensus we came to after discussing the video that night. It’s now or never.

At that point, despite Joey’s severe delays in almost every area, he was still only receiving speech therapy one time a week through the county.

That was all. And with almost no progress being seen, he clearly needed more.

Joe immediately began researching UC Davis to see if we could go there to become part of an early intervention study. We’d go anywhere we needed to, we decided. Upon finding that all of their studies were closed, he began researching distinguished universities on the east coast and what they had to offer.

Eventually he came across the Child Study Center at Yale University and after a thorough application process, and phone interview, we received the news that Joey had been accepted into their research study. This study would focus on children with early signs of autism, and children like our Joey, who were merely developmentally delayed (or so we thought).

I called my mom and thanked her profusely for sending me that video to watch. We felt so grateful to her because that was the impetus that had brought all this about. Now Joey would be going through an evaluation with top researchers in the country who would be able to give us a concrete plan of action for making the most progress possible.

She shared with me at this point, that she had a strange, nagging feeling that we were supposed to watch that video. In her gut, she had felt that she could not let it drop until we had actually watched it. She didn’t know why, since none of us saw any signs of autism in Joey, but she thought the general message of early intervention was so powerful, that something in her knew we were meant to watch it.

I scoffed at this at the time a bit, but now I can see God’s plan had been set in motion, long before we had known it.

Had November 7th not been what it was, so much would be different today.

Joey, last year, on November 6th in New Haven, Connecticut.

Joey, last year, on November 6th in New Haven, Connecticut when he visited the Yale Child Study Center.

In just one year, we have seen so many positive changes in Joey.

Had we not received the diagnosis, we would never known to demand a drastic increase in services through the county, which brought more incredible therapists into our home.

We would not have had a clue about searching for Applied Behavior Analysis (ABA) therapies in the area, and he would have never met Jess, who now works with him 13 hours a week and who we view as a gift from God.

We probably would not have realized how much we could be doing, as parents, with Joey right in our own home.

Because of all of these events, Joey is now able to:

*say Daddy, Mom, Daleigh (still working on the C!), Bop, Grampie on command

*make choices when offered, by making a type of vocalization or pointing (For example, if we ask, “Joey, do you want to go in your crib or rock with mommy in the chair?” he can make a clear choice)

*perform quite a few motor imitations upon command (clapping, waving, folding hands, putting his hands in the air, etc.)

*demonstrate understanding of simple commands and can even perform some 2-step commands (“Joey, go pick up that fork and give it to daddy.”)

*can identify all of his colors except pink when asked to point, and can even label blue things with the word, “blue”

*can identify all of his shapes

*can make connections between items and what they are used for (“Joey, point to what we use to eat,” and he will point to a fork, etc.)

*can use his PECS (picture symbols) book to request toys, food, etc. that he wants

*imitate some words and sounds now on command

*has peed on the potty a few times since starting potty training

*can climb up and wash his hands at the sink, with guidance

*can climb over and under things so much more easily

*loves to color and will sometimes imitate circles and lines

*can request some things with the word (“mik” for milk, “pee pee” for potty, “daddy” “poh” for pillow, etc.)

*pretend playing with his beloved rainbow bear, feeding her crackers and milk

Just to put it into perspective, on Halloween a year ago, we were overjoyed when he handed me a small goldfish container to request one…and this level of excitement was because this was the first time he had ever communicated a clear want/need to us at that point in time!

In one year, he has made so many gains, and it is critical that we remember all of this.

It hasn’t been an easy year…the adjustment to the diagnosis; the development of a seizure disorder; dealing with the  meltdowns that have come about that are most likely linked to the daily seizure meds…we definitely have our up days and our down days.

In addition, this month he will begin the Child Preschool Special Education (CPSE) process where he will have another full evaluation to determine his eligibility for services again for preschool next year. And November is also the month where we will have his annual IFSP (Individual Family Service Plan) meeting through the county. Both of these will include testing and test scores that will put into black and white how far behind he is compared to a typical kid. Despite all of his incredible progress in the right direction, those test scores and percentile rankings will stare me in the face, and I will undoubtedly cry yet again. They are so cold and impersonal.

But we decided last night, that we aren’t going to focus on the negativity that could be tied to November 7th, but rather the positivity.

Especially since 7 years ago, November 7th was also the date that Joe and I got engaged to be married.

It is a good day. A day that we should remember as being important, but not a day of sadness.

This kid is on fire…and ya can’t stop him now.

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A New Outlook

The last day and a half has been a whirlwind.

And yet, all I can think about in this moment is how blessed we are.

Monday was a good, if not ordinary day at work. I left right after school for a doctors appointment in Cooperstown.

So at 5:35 pm, I was just coming back into town when my phone rang.
Whenever Joe calls me now, at a time that is unexpected, my heart skips a beat. I just spoke to him when I left Cooperstown. Funny that he’s calling again before I’ve even pulled in.

I answer the call and hear a very calm voice on the other end. “Honey, are you almost home?” “Yeah, why?”
“Ok, everything is ok but Joey just had another seizure.”

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Noooo. No. No. No. Not my baby. He was only supposed to have one round of seizures and then never again. It was supposed to be a fluke. Oh my god. Joe leaves for his Vegas work trip at 4 am tomorrow. I can’t do this alone. I am not strong enough to do this alone. God please watch over my baby. God please watch over my baby.

I was one minute from my house. All I know of that last part of my drive was a blur of random thoughts and tears.

Then on the other end of the phone I hear a little, but strong voice.
“Mommy, calm down. Everything is going to be ok. Joey is going to be ok, Mommy. Joey had a seizure, but he’s ok. And I helped Daddy and went and got Joey’s bag from the car, Mommy. Calm down, Mommy. It’s ok.”

Joey’s bag is not just any bag. It had his seizure injection meds in it. My little girl, instead of panicking, helped save the day. They didn’t end up needing to use the Diastat, since the seizure only lasted 2 minutes, but having it there is an absolute necessity. Joe can’t leave Joey mid-seizure to run outside to the garage and get the bag. So Caleigh did it.

Thank God for the strong people in my life.

For my daughter, whose strength and courage and determination I am not sure I’ll ever match. But I’m going to try.

For my husband, who, in the middle of Joey’s third seizure, in the car on the way to Albany Med, calmly talked me through it, as I was speeding like a bat out of hell, in order to prevent my own panic attack from occurring. I’ve never been more grateful for him than in that moment. (And I’m pretty darn grateful for him all the time!)

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And I thank God, for my sweet boy. For the fight in him that, after 36 years, I haven’t mastered. The grit. The perseverance. The strength to keep going and work his hardest, despite his path being so much harder, most of the time. What a blessing he is!

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I had someone recently comment to me how awful it was that a little child was having trouble with their speech and language. it’s just so sad, isn’t it?

I immediately felt anger inside, not that I let it show.

Why is it joyous when someone is naturally gifted, and sad when someone has to work hard for something?

I’m trying to figure out why we say that is sad.

When you struggle, you build character. When you persevere, you find strength. When you work harder to achieve something, you experience true pride.

Those are all positives.

Raising a child with autism, and the other challenges that can come with it, is not easy. I’ve said that time and again.

But it is most certainly not sad.

As I sat in there in the Albany Med ER, after the fourth seizure, I found myself being grateful for the seizures.

God could have given us any cross to bear, but he chose to give us something manageable.

Yes, Joey will probably have a seizure disorder for life. That will be a challenge. Yes he will have autism for life. That will also be a challenge.

But it’s not unmanageable. We can handle this. You push through and you just do it. By the grace of god and with the support and prayers of those around us.

Joey was admitted to Albany Med on Monday night. The frequency of the seizures (4 seizures in 2 hours) was deemed worth watching, but thankfully none of them went past 2 minutes long, which in the seizure world, is considered somewhat short, or at least normal. (Though, go ahead and put a timer on for 2 minutes. In the moment, 2 minutes is an eternity when you are watching your child seize.)

Since they had already done an MRI when we were there 6 weeks ago, they did not need to put him through further testing. The neurologist decided to put Joey on a twice a day medication, indefinitely, in order to prevent seizures.

Some additional, but very important gratitudes I want to mention:
Our families and friends who prayed nonstop and gave so much support throughout.

My work colleagues who pick up the slack and do an amazing job when I’m out unexpectedly, and who are unbelievably understanding. And Caleigh’s sweet teacher and my friend, who texted me during school on Tuesday to let me know how she was doing.

Joe’s bosses, who run a very efficient and strong company, but who had no problem putting family first yesterday. It would be a different blog post, I’m sure, if I was here alone right now and Joe had still gone to Vegas.

The nurses and doctors at Albany Med…for so much. For letting Joey sleep. For the kind words. For the knowledge and skill they possess. For the comfortable way they made us feel in a place that already feels too familiar.

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For Joey’s neurologist, Dr. Greenblatt. For calling me back immediately during the seizures on Monday to guide us through what to do. And for checking in on Tuesday morning at 8 am, before I had even thought about giving him a call.

And so many more!

We are grateful…for so many…all the time lately.

If being presented with challenges in life makes you more grateful for all of the little things around you, it CANNOT be a bad thing.

Last night, Caleigh wanted to hear “Joey hospital stories” before bed. She wanted to know every single detail.

These experiences have brought us even closer together as a family, and for that I will be eternally grateful.

Just Different

I don’t post nearly as often as I should…considering the incredible progress that has been taking place over here the last few months!

Just to give you an idea…this kid:

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waved goodbye to his therapist, Sherri, this morning and said, “bye bye.”

Seems like such a simple accomplishment for a little boy who is 2 years and 4 months old. But in our eyes, it feels like a miracle!

He got a great report from his developmental pediatrician regarding current and potential progress. His social interaction, which has always been a real strength, continues to be a highlight for Joey. He’s requesting what he wants, which still seems a bit surreal. His hitting has decreased to the point of almost being non-existent…thanks to him being able to semi-understand the “naughty spot.”

He does still have his one repetitive action that he tends to do…the picking up objects and dropping them…again and again and again. It is a stimming behavior, that is more of an OCD repetitive type of obsession that is hard to break…as opposed to the kinds of rocking or other type of calming type stimming behaviors that can also be common in children with autism.

But the progress…oh, the progress.

I found an old notebook from an autism conference that Joe and I went to in Syracuse last December. In my notes from that conference, I had written what my goals were for Joey…my hopes and dreams for his progress.

I had written:

What we hope Joey will eventually do:

*will recognize us or acknowledge us in some way when someone asks, “Where’s Mom?” or “Where’s Dad?”

*will wave goodbye

*will say his first word

*will hug and kiss us

As of now (actually as of a few months ago, I’ve just been negligent in posting), Joey does all of those things and much more!!

He’s been acknowledging who we are for a couple of months now, but last week when Joe said, “Joey, where’s Momma?” he walked over to me, tapped me (I can remember just back in November when he didn’t even know how to point!) and said, “Mama!” My heart absolutely melted!! He will also now say “Dada” fairly regularly to Joe and has even been able to imitate “Cay Cay” for Caleigh a few times recently (I hope that one sticks – it means so much to her!)

Now, not only does he wave goodbye when he hears someone saying goodbye to him (and obviously just now even started saying it back), he will also blow kisses when someone leaves (that one is a crowd pleaser!).

And the words…

Well, the words just keep on coming!

He is saying new words everyday and we are always surprised at how advanced they are! For a boy who, prior to saying his first word in April, had difficulty even imitating basic sounds, I’m blown away at the rapid pace of his advancement.

A snippet of consistent words: toothbrush, ball, momma, dada, dog, bear, outside, on, off, out, bath, big block

Words that we have heard him say but they are less consistent or have come and gone: maraca, shut door, I pop, cay-cay, puff, cracker, goldfish, ocean, bubbles

There are a lot more, but, as I said, they come and go. When he is motivated and truly wants something, that always makes a big difference, too!

One of our favorites is that he gives real hugs and kisses all the time now…even when I can tell he doesn’t want to! haha

Remember when all Caleigh wanted was hugs from her brother?? Hugs and kisses happen all the time for her, too! She gets genuinely excited for all of his accomplishments, but none as big as that one!

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Life isn’t always easy with a child with autism, but I’ve already started to see why people call it a blessing.

Never before have I taken the time to genuinely appreciate every small moment like I do now…to find joy in the little things.

This journey, this path…it is not any better or any worse that what we’d had planned. It’s just different.

We are truly blessed with this little family of ours…and I wouldn’t change a thing.

When I Lack Strength

Something I’ve discovered as a new “special needs” mom

is that,

while I can still handle my normal day to day life fairly well,

I have a real difficulty handling things any bigger than that.

I used to be much better at handling big stressors…

or thinking things through rationally when presented with a problem.

Nowadays, I’m a basket case when things pop up unexpectedly.

Now, when I’m dealing with Caleigh throwing a tantrum

or dealing with conflict at work

or finding out bad news of some type…

I lose it.

I just start to cry…uncontrollably.

There is no thinking it through rationally.

There is no analyzing the situation.

I just cry.

(Thank GOD I have a supportive husband!)

After a bad day, if I have somehow managed to keep it together and not cry at work

then I come home

and as soon as I lay eyes on Joey,

I burst into tears.

He’s made great progress

and I’m grateful for all the good days

and for the incredible, warm and caring therapists

that spend up to 15 hours a week within the walls of our home.

For my strong husband

and the undying emotional support of our families.

But the strength I muster day to day

to not be overwhelmed by this diagnosis

and what it means for my son and his future

disappears in an instant

on those bad days.

My focus has started to shift.

I no longer care about what I used to care about…

or want to fight for what I used to fight for.

I have no fight leftover anymore for the extras, I’m finding.

I have one little guy (and girl) I am willing to fight for.

The rest of it, I concede.

The blessing and the curse of an autism diagnosis

is that you realize that nothing else really matters anymore.

My children and their futures…

my happiness with my husband…

trying (and yet, often failing) to be a good person.

That’s it.

I can’t control much in this life.

But I can certainly try my best with those 3.