I wrote the following in February 2005 when Jakob was three-and-a-half…
“We got the results of Jakob’s ADOS yesterday and they weren’t what I was expecting. I really believed he would test on the autism spectrum but he didn’t. It was autism. The label is autism. To put it in perspective, his score could’ve been 0-22 with 0 being no autistic characteristics. A score of 7-12 would have been autism spectrum disorder. Jakob scored a 16. Autism.
For the first few hours after we heard that word, I felt like I was having an out-of-body experience. Thoughts were racing through my head at 100 miles-an-hour…What do I do next? What happens when we get old? What happens to Jakob when we die? Will he ever talk? Should I have another baby so he won’t be alone? What if we have another baby and he/she is autistic too? Or has something else wrong? How do we afford more therapy? What haven’t we tried to do to help him? What does he understand…does he know how much we love him? This must be my fault…what did I do to cause this? What did his dad do? Was it his vaccinations? How do I tell my family? Will they understand…will Jakob ever understand??? How will other kids treat him? HOW DO I FIX THIS???”
Reading that takes me back to the place I was in that day and I remember those feelings so clearly. Partly because they return every now and then in new and different ways. The uncertainty, the wondering, the frustration, the fear. It’s all just a part of the party, I suppose.
The big difference now is I’ve learned how to not wallow in the pain and suffering that comes with all that fear. I’ve figured out that the fear is all in my head. It’s not real. It’s all imagined. When I look at Jakob and I’m experiencing any kind of stress or discomfort about his health and well-being or his future, I ask myself one simple question, “Other than what I’m thinking and believing right now, is he ok? Am I ok?”
And so far, every single time I’ve asked that question, the answer has been that we’re both ok. Better than ok, actually, he’s happy, and for the most part, he’s healthy. For the parts that aren’t so healthy, we see some great doctors, we’re managing his symptoms and healing his system. He continues to learn and progress and he’s developed a passion for trying new things. He has so many people who love him.
Then I remind myself that I believe the universe is benevolent and that the purest of heart will always be taken care of. That one belief eases any and all concerns that may arise in me. It’s faith. It’s a knowing. It’s a matter of letting go of all the worry and being in the moment and just loving it all. What a journey. What a kid. What a life. It’s all just how it’s supposed to be. There’s nothing for me to fix. It’s all perfect.Read More
My first vacation with Jakob was a 22-hour road trip from Tampa to my parents’ house in Central Illinois. Jakob was 10 months old and already showing some signs that there might be something going on that made him “different.” He was pretty good in the car as long as he had his little yellow toy telephone in his hands and he was hitting the same buttons over and over to make the same series of beeps play. Over and over and over again. Non-stop, every minute we were in the car. He didn’t sleep and would cry if he dropped the phone. Which happened frequently. We were driving a Nissan Maxima and I couldn’t always reach around to find the phone for him so we made a lot of stops to retrieve it.
Exhausted by the end of the first travel day, we looked forward to some rest when we stopped at a hotel for the night. Thinking Jakob would finally sleep, we set up the pack and play. That turned out to be a big fat no-go. Wide awake and ready to party, he spent the majority of the night sitting up between us on the bed in the dark, laughing, kicking, crying and playing with his phone. No one slept much. The second day in the car, it was the same story but with a twist. By the time we reached my parents’ house, his lips and mouth were covered in this thick white creamy stuff. Thrush. A trip to my parents’ family doctor and some medication that made his entire mouth blue took care of that. On the trip back home to Tampa, we didn’t bother to stop at a hotel since we knew no one was going to sleep. We drove the 22+ hours home straight through mostly in silence except for the beeping of that phone.
I’ve taken Jakob on a lot of road trips since that first long, tiring adventure and it sure has gotten a lot easier. He still loves to ride in the car but that little yellow phone is gone. He gets so excited to stay at the “Hampton Inn House” and has the biggest grin on his face when he finds out the room number we’re staying in. He has no problem sleeping. He doesn’t eat any foods from restaurants so I always have to pack his meals. So if it’s more than one day in the car, we really need a suite at the hotel to make all the food prep easier. I make sure he has something to do that he enjoys like a color or sticker by number book or his iPad. The more activities, the better. I always double check that we have more than enough pairs of socks and underwear since he wants one fresh set in the morning and another at night. I take his toaster because we can’t put his waffles in one that has had anything with gluten in it. He is gluten and casein free and can have a reaction even if it only touches something he eats. Even though at this point I believe he’d do fine on a plane, there’s just too much we have to pack including groceries. And that damn toaster. Plus, he loves seeing the routes and roads that he’s been studying on his iPod and atlases and I wouldn’t want him to miss all the detours and potholes along the way.
For me, a vacation needs to be relaxing. If I have a kid who’s stressed, frustrated, tired, scared, angry or anxious, that’s not relaxing for anybody. So on any trip, I take with him, my main priority is his comfort level. I’m not going to take him somewhere that’s going to be overwhelming for him until he’s ready for it and is excited to go. Jakob is turning 17 this fall and we’re going to Sesame Place. He’s beyond thrilled and talks about it every day. I’m pumped knowing that we’re both going to have a ball. It’s perfect timing for us, and I personally can’t wait to meet Cookie Monster. He’s my favorite.Read More
In so many ways, the beginning of this journey with Jakob felt like a one-woman war against time and “the man” who was trying to keep us all down. Of course, that wasn’t the case, but you would have been hard-pressed to convince me otherwise at the time.
The hopeless future that was being presented to me, the obvious frustration and discomfort that Jakob was feeling, my sheer exhaustion from Jakob only sleeping three hours a night was just the beginning. Then there was the incredible amount of information to sift through to find the cause of all the symptoms and the best treatments for them. And then the pushback from mainstream medical when I made choices they didn’t agree with.
No one understood. Nobody got it. No one could relate. Unless they too were going through it.
Back then, I didn’t know anyone else who was experiencing a brand new autism diagnosis. I didn’t have another autism mom to talk to, share ideas with or cry to. I would try to have conversations with my friends, family, and co-workers, but they never went too far. I’d tell them what was going on in my house, and I heard a lot of “it’ll get better,” but that was about it. I really think they thought I was exaggerating or being overly dramatic. Or, maybe I was just making excuses for being late or not getting a project done or not making that phone call or seeming like I really didn’t care about them or my job. They didn’t understand, but how could they?
My pain, my fear, and my guilt were so all-consuming that it was impossible for me to just get through the day without self-medicating with wine, cigarettes, food and other things. I can remember someone saying to me that if I kept it up I was going to kill myself and I said I didn’t care. And I meant it.
And then I found “my people.” Through Jakob’s therapists, I was introduced to other moms like me who were thinking, feeling and believing the same things that I was. I realized I wasn’t quite as crazy as I thought. I no longer felt alone. They got it. They got me. And most importantly, they got Jakob.
I was able to take Jakob to their house and it was OK if he broke a lamp or peed on the wall (neither of which he did, but if he would have it would have been OK). He could tantrum non-stop for two-hours, and they were unfazed and knew exactly what to do to help me. I could be in any mood I wanted – pissed, distraught, exhausted, hopeless and it would be OK.
I don’t think I would have made it through the early years without those ladies, many of whom I still consider my dearest of friends 13-years later. After all our kids have been through, they still get it, they still get me, and they still get Jakob. Acceptance, non-judgmental and unconditional love – the trifecta that has made total strangers connected through a diagnosis, my family.
So if you’re a mom and you feel like you’re fighting a one-woman war, it’s going to be ok. Your tribe is out there. Go find your new extended family, share your failures and triumphs with those who get it. It will get better. A lot better. I promise.Read More
For the past couple months, Jakob and I have been having discussions about what he would like to do this summer. He has a few trips planned, one to see his family in New York, one to see my parents in Illinois and then one to see his biomedical doctor in upstate New York.
On our way to see Dr. Bock, we’re going to stop at Sesame Place in Pennsylvania for a day or two, and he’s super pumped. And I’ll be honest, I think I might be as excited as he is. Sesame Street for me is a league of its own. It’s not Blue’s Clues, Barney or any of the shows that were big when he was little. It can easily be appreciated by kids of all ages. My mother who is 77 still loves to watch it with us. I mean, seriously can you beat Cookie Monster, Grover, and Oscar? I think not.
Between those three road trips, we have approximately 20 days of summer break taken care of. Figuring out what to do with the other 70 has been the bane of my existence for the past three months (I’m being only slightly dramatic).
If he were a typical kid, it would be no big deal. A Gold Pass to King’s Island, a driver’s license and a car would take care of it. But what we need to take into consideration is a little more complicated than wondering if I have good enough car insurance.
Will he be able to keep his regular therapy schedule? Are there camps that work around his therapy schedule? What camps are there? Who’s running them? What are their qualifications? Are they camps that just keep him entertained or do they actually work on the goals in his IEP? Is there anyone working at these camps who are already familiar with Jakob? Will the people there be patient enough to take the time to figure out what Jakob is trying to tell them? How do we get him there and who’s going to pick him up? Will he have fun? Do they do things he enjoys? Will he be safe? How close of an eye will they keep on him? What are the options for days and hours? Are all the good camps already filled up? How much is it going to cost? Is it worth it? Do I even really want to send him to camp?
Maneuvering it all requires calm contemplation and a focus on what it is I want Jakob to get out of this three-month break from his high school for kids on the spectrum that he loves so much. I want him to be happy, healthy and safe. Those are always the top priority. I want him to have fun. For Jakob, that means doing something he enjoys with people he likes and being met where he’s at. He needs to feel heard and understood, respected and celebrated. And I would love for him to continue loving to learn how to communicate more clearly and make new friends and interact with them.
For us, that means summer break is filled with horseback riding, music camp, swimming, plenty of arts and crafts, Saturday night parties at the house with all his friends and plenty of speech and occupational therapies.
The pressure on special needs parents surrounding summer programming is intense. We know our kids are behind their peers. In some cases, far behind. We know how hard they work all year long and the thought of putting them through that in the summer too is painful. We want our kids to just be able to be kids. And we also know that if they’re left to their own devices, they will likely grab their iPads, PlayStations or DVD collections, and that will be it.
I believe there is a happy medium. Focus, make fun a priority, and identify what motivates them and figure out how to use their motivations to achieve the behavioral, social and educational goals you have set for them. When we do these simple things, our paths become clear and we all have a great summer break.Read More