After the Diagnosis

My younger sister Amy needs some help, and she asked me if she could use my blog to reach out for it. Of course, it was the least I could do. I will let her tell her story, but I will say that I love her and her family very much. They are incredible people who are incredibly special to us. Regular blog readers may have seen her pop up in posts from time to time over the years, most recently when she and her husband Joe traveled nine hours to take care of me and my family when I was miscarrying. They are awesome people. The kind of people who deserve to receive as much help as they have given to me and to others. 

Not only does Amy share her story below, but Joe does as well. Read them both, and then please - if you have any prayers, advice, or support you can share, do so in the comments. 

Amy
I’ve sat down to journal about what is been going on with us about 5 or 6 times in the last two weeks. Every time I write, a different story is told. Whether I am in the throes of worry and pain, or having intense moments of gratitude for the bountiful blessings that we have been given…a very different picture is painted of what we have been experiencing.

This morning I am feeling intense gratitude for a number of blessings in my life, big and small. I’m grateful for my dream house that I am sitting in and for the mug of pumpkin coffee I am drinking as I write this. I am thankful for my sweet daughter that I hear singing in her bedroom as she waits patiently for us to tell her it is time to get up. I am grateful for the happy sounds I hear coming from my son’s crib. I am grateful that my husband, Joe, happens to be the strongest man I know, who takes such better care of our family that I ever could have dreamed. Over the last 2 weeks, our lives have completely changed in so many unthinkable ways…and it is safe to say, we were not prepared for any of them. Well, I suppose we have always been preparing for this…we just didn’t know it at the time.

Almost two weeks ago, my 21 month old son Joey was diagnosed with autism. Although the days and nights spent crying almost nonstop have been replaced by shorter bouts of occasional tears, my eyes still well up every single time I speak or write those words.

God sure does work in mysterious ways. I mean, when I applied to Syracuse University 17 years ago, I knew I wanted to be an elementary school teacher. I was immediately enrolled in the Elementary and Special Education Program. "But I don’t want to be a special education teacher," I said. "That’s not how it works here," I was told. "You will get dual-certification because we prepare our teachers to work with all types of students."

Despite the fact that my program at SU completely changed my life and the way I would forever view education, I still had no idea what I was being prepared for.

When I was 27 years old, I met my husband. I was basically single my entire life until we crossed paths. I am now completely certain why my life played out the way it did. God did not want anyone else getting in the way. This man was undoubtedly meant to be by my side during this lifetime…I’ve always known this, but after the last two weeks, there is absolutely no question in my mind.

Early on in our relationship, we spent four of our happiest years together in California, experiencing so many new things and learning to depend on each other being totally on our own. But after we had our daughter four years ago, we started to have this nagging feeling like we needed to move back to New York…we knew it was time to be closer to our families again. Only now is it completely clear how important that move really was.

As I am sure you can probably guess, shock, deep sadness, fear, and worry don’t even begin to describe the range of emotions we felt as we’ve dealt with this diagnosis. I feel like I have so much to say and I don't know where to start and I feel like I don't have the time to get it all out. But so far, the only thing that has gotten us through this has been the unimaginable support of those around us and being able to talk about it.

So I also have felt completely compelled to write about it publicly, for a number of reasons.

1) My sister Karey’s blog is followed by many faith-filled and prayerful people and I am looking for as many prayers as possible in this moment. Prayers for Joey and his continued development during this critical early intervention time. Prayers for Joe and me to be filled with the grace of God and to have strength to continue moving forward finding the best services, therapists, programs, etc. for our son and being the best advocates that we can possibly be. Prayers for Caleigh…that she can find her own balance of understanding and loving her brother, and sticking up for him and wanting to care for him and protect him…while always knowing that we support her living her own life and pursuing her own dreams and not feeling held back…that she does not become the forgotten child who resents her brother due to how much of our time he inevitably will consume. Prayers that we can find just the right balance as parents that both of our children grow up feeling loved and supported and most of all, happy. 

So thank you in advance for all the prayers!

2) For the same reason, I know Karey has hundreds (maybe thousands?) of followers around the world, and I am fairly certain that some of them will probably have amazing resources, contacts, articles, books, or stories of their strength, experiences, and hope for me as we pursue options for Joey. We are open to anything at this point. The more public with our experience that we go, the more resources we can learn about, then the better it will be for Joey.

3) I also am finding it incredibly difficult to break this news to people, one on one. I have started to move to a place of acceptance and no longer cry nonstop. Yet each time I tell someone for the first time, I break down, especially when they naturally become emotional about it. Even envisioning myself telling the story to different people makes me cry…every. single. time. It took me almost a week to talk to my own family about it. I still haven’t told many of my best friends. But I am finding that, once it is out in the open, I am okay. I am able to talk about this rationally and logically, and without tears, for the most part. 

4) And probably the biggest reason I am writing about this publicly - we need support. Plain and simple. I think I need people to know about this situation we are going through because we can’t go through it alone. I am terrified that people are going to start hearing this news and will privately share it with one another and will talk about it without me there. I won’t know who knows about it, but inevitably people will find out. They might think they shouldn’t know or shouldn’t talk to me about it. Or they might not know what to say. But I am here stating that I WANT you to ask about my son. I WANT you to ask how we are doing. I don’t want this to be some secret, private thing that people are afraid to talk to me about. I’m going to need to talk about it in order to make sense of it all…so I’m here to tell you, PLEASE ASK.

It’s amazing how your life and its trajectory can completely change in one single minute, and at the same time, be exactly the same as it was just before. It is such a paradox. My son is the same child. Nothing happened to him as Joe and I sat around a giant conference table at the Yale University Child Study Center, hearing life-changing news. When we came out of that room, there he sat, eating goldfish and looking up at us with a bright smile, deliriously happy to see us. Our sweet boy, with the same strengths and weaknesses that he’d always had…yet somehow that meeting changed everything.

Well, I should say, it was only OUR lives that have changed dramatically in the last two weeks.
We know more about autism than we ever thought possible, since we have spent every waking second researching on the internet, reading books, and visiting local schools.

I now understand and believe in the power of intensive early intervention therapies and that we need to do absolutely anything to get the best for our son, whether that means me leaving my job to be home more, moving somewhere where those resources are available, or becoming certified in some of these intensive therapies myself.

We truly realize the power of family and friends. It has been hard to talk about what we’ve been going through, but to those we have been able to reach out to for support, we have been blown away by the love and understanding we have been shown.

The fear when thinking about the future is indescribable…so we have forbidden ourselves from focusing on that for now, as much as we can avoid it anyway. One day at a time.

I doubt my strength and resolve to do this, every single day. We are on a roller coaster that is exhausting...and I am not sure how long I can endure the ride. And it just started. To say I feel overwhelmed does not cover it. But everyone keeps saying to just keep putting one foot in front of the other and just do it…so I guess I will for Joey.

We go back and forth between acceptance and denial daily, though each day we move closer to that place of acceptance. Some may think that researching different treatments might be a sign that I am in denial… And honestly, I am okay with that for now. My denial is not preventing me from doing what is best for my son. If my denial made me continue my life as it has always been, then I would say it would be harmful. But I am not acting like he is a typical child... We are doing everything we possibly can for him, as recommended by the specialists at the Yale child study center where he received the diagnosis.

As a special education teacher, I’ve always been an advocate for students with special needs and ensuring that they get the best education possible. It’s always been incredibly important to me as a teacher that all children learn to treat one another with kindness and respect. But that has been brought to a whole new level now. It is so much more personal. 

Our long-term goals, in a single instant, have been altered. I was a few months away from getting my certificate to be a school administrator. Those plans are now indefinitely put on hold, as that career path is no longer in line with what is best for my family. Just a couple of days before we left for Yale, I was planning my internship for the spring semester. How quickly things can change. 

I have an intense appreciation and gratitude that my children are safe, healthy and happy. While this diagnosis is unquestionably life-altering, it is not life-ending. There are many other diagnoses that parents get every day for their children that are a million times more challenging than autism…and the gravity of that is not lost on me.

Ways that my Joey is still exactly the same boy: He loves to giggle and snuggle and play with his sister more than anything else in the world. He loves jumping in his crib and playing peek-a-boo. He is a great eater and a great sleeper. He absolutely loves Poppa, my 90-year-old grandfather. He loves to snuggle on him and always has his eye on him. And the feeling is mutual. He loves to pet and chase Frankie Moons. He still can’t talk yet (though this week, with new strategies from the specialists at Yale, we FINALLY got him to be able to consistently sign the word “more” independently!!!). He is loved unconditionally by his grandparents and all of his aunts and uncles and cousins…and basically everyone who knows him. He has the best smile and laugh you could ever imagine. Everyone constantly comments on how sweet he is. You can truly see it in his eyes, even though he has never uttered one word.

One of my biggest struggles in life and with my faith has been acceptance. I grapple with it - accepting God's will for me and accepting those around me. Saying the serenity prayer is an integral part of my every day routine. However when I think about the serenity prayer – "Lord, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference," there is a section about having the courage to change the things I can. Why not do absolutely everything I can for my son during this time when his brain is able to develop the most? 

 I ACCEPT that my son has a severe disability that will most likely impact the rest of his life.
 I have the COURAGE, or at least I'm struggling to find the courage, necessary to research the best therapies and to develop more of my time working one-on-one directly with him to increase his engagement and social interaction in order for him to learn how to imitate better. All major research shows that it makes a difference.

As time goes on, I will develop the WISDOM to know what therapies are best…and also the insight about what parts of my son are just going to be who he is. 

I just don't want to have too much acceptance, where I let a label define that.

I don't want a label to let us to make excuses for my son…that he is able to do something or is not able to do something, because he has autism. I don't want acceptance to let us rest on our laurels too much. What if it was a misdiagnosis and we just said, oh well that is because he has autism, so we can't expect him to be able to do that. Think of how much time will be lost where progress could have been made.

Don't mistake this for false hope. I love my son for who he is and what he is able to do today. I will let him show me the way. I will get to know him even more closely over the next two years than I have over his first 21 months. I will spend less time on my phone and less time working. I will spend more time at home and more time interacting. That can't be a bad thing. So in some ways, I am thankful for this diagnosis. It is going to make me be a better mother to my son. 

Everyone who has been through this tells us that having a child with autism is, in fact, much like a rollercoaster. The highs are going to be higher and the lows are going to be much lower…and no part of this will be easy. But we’re choosing to focus on the fact that nothing has changed. My son is still the same sweet boy he always was…and God has done all he can to prepare us for this journey, together.

*********

Joe
Being told that your son has autism, by someone who isn’t invested in your life, is a difficult moment to describe.  Here is this professional at Yale, one of the top Autism research facilities in the nation, telling you your son has Autism, as just a matter of fact.  For you, you feel like your life just changed.  The expectations that you had of your son going to a regular preschool like his sister, high school, college, marriage, kids, grand-kids...your son learning to be a man who protects and cares for his family the way that you were taught by your father and your grandfather….they disappear in that second.  They are replaced by fear, sadness, and a variety of emotions that the written word can’t even describe.  Those emotions are then replaced by doubt and disbelief.  OK, I heard you, professional at Yale, but I don’t believe you.  Do you see my son?  Do you see this sweet boy who runs to me with outstretched arms? Do you not see his eyes?  How he looks into your soul, with this sweet caring understanding of you.  Do you hold him tight in your arms, when he is scared?  Do you comfort him when he is sick?  NO!  You don’t do any of that, so I know him. You don’t.

When we left Yale, the three-and-a-half-hour drive home could only be compared to how I imagine it feels to be locked in a box and wanting to scream for help. Here we were, three-and-a-half hours away from anyone who cared, driving through traffic, taking wrong turns because Amy and I were too busy fighting away tears than paying attention to signs or traffic.  What do we do now? My first reaction was shock, then it turned to hope.  We’re working with Yale. Yale shows an interest in my son’s development. Can we ask for more?  The drive home was filled with every emotion possible.  Our minds raced in a million different directions. But our main goal was to get home, hug our daughter and hold our family tight in our arms.  

That night when we put the kids to bed, I kept reassuring myself that “nothing changed.”  Joey is the exact same boy now, as he was a few hours ago. Autism? What is that anyway? So he will have some delays, no big deal. Amy is an amazing teacher, surely she can cure this, right?  I mean…everything has a cure, doesn’t it? I am the type of person who thinks that way, in every single avenue of life.  I feel there is nothing that I can’t handle. 

So the research began. I think I read more articles on autism that first night than I can even count. A common theme I was reading was that Autism can be reversible if caught at an early age. YES!!!!! That’s what I needed to hear.  I can do anything in life. I don’t fail, I refuse to. Autism, looks like you messed with the wrong family. I know Amy won’t give up…she’ll fight you, and I’ll take you on. Looks like you met your match. 

I had so much hope going to bed, it was really nice. I was still emotional, but in a “the hell with this, let’s go! You want some of this Autism, you just got it!”
 
That night, I went to sleep around 11:30. I woke up at 2:30 a.m. and couldn’t stop crying.  I mean, literally, couldn’t stop myself. I laid in bed for an hour, sobbing, uncontrollably. Finally, around 3:30, I went out to our kitchen, sat on our bench and stared out the window.  Cried some more, then some more.  I couldn’t stop the thoughts that were haunting me. When Amy and I first started talking about having children, I remember my goals as a father for myself.  Make sure you raise him to be strong, independent, caring, hard-working.  Make sure he values his family…being faithful to his wife and above all…protecting everyone he loves. 

In a few seconds at Yale, those goals were replaced with fear, a very real fear in my head.  Will my son die alone? Will I lay on my death bed someday and look into his eyes and know that when Amy and I are gone, and our parents have long since passed, our sisters gone...what is to become of my only son?  I couldn’t stop thinking about it. Will he be in an assisted living home, by himself...alone? Alone forever?  

 I know, as I type this, that those thoughts could not even be close to what Joey experiences in his life.  It is a fact, that if caught at this age, a lot of therapy can really improve his ability to learn and adapt.  I also know that the following Monday morning I was on the phone with every professional I could find, every single person who knows about autism was contacted and a plan is being put together to best help Joey. I know I won’t let this affect me for much longer. Amy and I are going to fight for what is best for our son…it’s what we do, we don’t give up.  We will fight for Joey harder than we have ever fought for anything in our lives. He will become the best Joey possible and God has a plan for us all, we know this and soon I will embrace it and be the champion he needs me to be.

My family is a gift from God. Starting with my wife. She is the most caring, compassionate person I know. I am so blessed to have her, through this journey and every other we have been on and will go on in the future. My daughter – she is amazing.  Funny, smart, beautiful, as caring and compassionate as her mother, but as cocky and know-it-all as her father. My son is the best. He laughs deep belly laughs that would make even the most hardened and sad on this earth smile.

Hope is an interesting word. By definition it means “a feeling of expectation and desire for a certain thing to happen.” I find this interesting because I really don’t have a desire for a certain thing to happen.  I have a desire for us to get all the help that is needed for our son to progress as far as he possibly can. I have a desire for him to continue to smile and laugh as much as he does. I have a desire for my daughter to accomplish everything in life that she is meant to accomplish and for her to always make me laugh and smile. I have a desire for our family to continue to learn from all of this and be better from it. So, when I read the definition of hope, I have no certain thing that I want to happen, but a list of things that perhaps could happen. Really, I have learned, it is all in God’s hands.  If we find all the tools necessary for Joey to succeed, then perhaps he will, but also, perhaps he won’t as we once imagined. But it’s all going to be great. This is a journey that we are on. This trip isn’t drastically different from the journey we were on before, but now it is more focused. There are more gas stations and pit stops, maybe a detour here and there, but we will put a map together, follow it and re-route when needed.

The strange thing about this trip is that our map doesn’t have a final destination.  We know that wherever we end up, is the place where God wanted us to be. Along the way, we stop for food, play games, read, laugh, and love each other. When we get to where God wants us to go, we look back and smile at what an amazing trip it was. Filled with laughter, learning, love and just a great fun trip we all took together. The car is not just filled with the four of us, but all of you as well. It is filled with friends, family, professionals and everyone we love in this world. We are so blessed to be surrounded by so much love in our community, so many friends and family. We want everyone to come along for this ride…and enjoy it as much as we will.