Please let me begin with a huge, heartfelt Thank You for the shares, comments, encouragement, likes and views! I really appreciate it, and I hope this helps you or someone who reads it. We've spent the past eight years of our lives, and will spend the remaining years of our lives, living, and loving our child, who happens to have Autism.
My last post was a little bleak, and from how we remember it, it was exactly how we felt. I don't even remember how we got home from the hospital, or really what happened over the next few days. All I know is, we were lost...
I don't remember telling our parents, I don't remember sitting for long periods and crying (I know, you're surprised...) I don't remember Josh being particularly quiet or depressed, but I do remember that we were different. And it seems like such a long time ago, but for all that I don't remember, I do remember looking at my five men, my Josh, Jack, Matthew, Patrick and Peter, and feeling this overwhelming sense of Love, Gratitude, and Hope. I remember sitting in bed a few nights after the diagnosis and talking with Josh - this, by the way, is the only time where Josh and I catch up. It can be for five minutes or, if I can stay awake, for an hour, but this is the time where we take for us. Pathetic, I know, but we've been sharing like this for, well, forever.
I looked at Josh and said, "what are we going to do?" and my husband, the love of my life, looked at me with tears in his eyes and said, "We are going to raise our family, because we are blessed. God gave us these children, he could have given any of them to another family, but he gave them to us. Patrick could be another's, but he is ours. We will figure it out, we will find a way."
Have I told you how much I Love Josh?
Well, from that moment forward, we began to form our action plan. And we lived, we loved and we laughed and yes, we cried. It was not going to be easy, but nothing worth doing, ever is.
We had so many unanswered questions - how do we explain this to our kids, do we? We knew we didn't want their lives taken away from them or over shadowed by their brother's needs. So that went to the top of the list. We are a "normal" family (I know, I said the n-word, and those of you who have heard me speak will feed back my own dynamite...all together now, "there is no normal" we are all different, we are all special). This is one of my many mantras in life. The sooner you embrace your special-ness, the happier you will be, I PROMISE!
Well, when Monday rolled around, we went to school, work, therapy, and I shared Patrick's new diagnosis with my dynamic duo, and together, we all began to form a plan. I was off and running. We were going to do something, and I knew it was going to be GREAT! I was introduced to this amazing lady named Dr. Brown at the Kelly O'Leary Center for Autism, and she gave me a long list of contacts and an even better group of power points. Now this was a language I could understand! HA! Manila envelope...PLEASE!
Dr. Brown explained that the hospital was starting a new program called Early Intensive Behavior Intervention (EIBI), and gave me the name of the physician to contact. So I called her, Dr. Kimberly Kroeger-Geoppinger, PsyD. I left her this pathetic voice mail, basically begging her to take Patrick into her program. He was almost four and I was told the cut off age for enrollment was three. I was, in a word, DESPERATE!
Everything I had read on Google said time was critical, the earlier you begin interventions, the greater the potential the child would live a "normal," or as I soon learned, "typical" life. Great, now, not only am I feeling desperate, but we will be playing beat the clock with Patrick's development.......AND, not to mention that we were still living with velcro and picture schedules, and I was learning sign language to help Patrick to visually process what we were verbally saying to him. (a quick side bar, and this is pretty funny. As I began to use sign language with Patrick - especially when he would tantrum - Josh and our combined families would look at me funny. Finally Josh said to me one day, you do know he is not deaf right? He has Autism. And as I sat there speechless, wanting to use a few choice four letter words with him, I realized that I had left him out of the action plan. I was gong through the motions with everything else, the other boys, Josh, the house, my job, and I forgot to really explain, and develop the plan with JOSH. I was in full-blown MISSION Mode. I forgot that we had just begun our race...and was sprinting...and we still had the entire marathon ahead of US, not just me, I was not alone in this, not that I ever thought I was, I had Josh, and together, we can do ANYTHING!)
So I sat down with Josh and explained what I had learned to date, and had planned with our therapy team. That signing helped Patrick understand what I was telling him. It gave him something to focus on other than my face, and it helped him process my words. Just like with the picture schedules and paint sticks, these all helped him understand what we were saying, and more importantly, what we meant.
I have had this same conversation with both of our Mothers, other family members and friends. Autism is such a confusing disorder, and people really don't understand, or really how to react. We have found, most of the time, that Patrick's Autism is the Big Harry Audacious White Elephant in the room. People just don't know what to say, or how to act, so they just avoid it. Again, I go back to the thing my parent's always told me, "You can tell us ANYTHING! No matter what!" That is really how we feel about our lives and about our journey with Patrick's Autism. You can ask us ANYTHING! No Matter What! All that we ask, is that you don't judge or criticize until you've spent a week walking in our shoes, and living our lives.
Patience is a good lesson, and one we continually receive a refresher course in. With Patrick, with our other kiddos, family and friends. Unless you've lived it, daily like we have for 10 years, it really is hard to understand, or to comprehend. The pressure, the panic, the sense of hopelessness. It is all very, very hard. But nothing good in life is ever easy, and let me tell you, how good it is! The joy when I come home from work every day, and Patrick and his brothers are there, waiting at the garage door to ask me how my day was, and give me a good squeeze, or when Patrick and Peter climb in bed between Josh and I for a quick family snuggle.
Fortified with God, Josh and a good healthy dose of Patience, and humor we begin to pray that we hear back from the Dr. and Patrick can get into this program. Many, many more miles, tears, tissues and love to come from the intersection of Hope and Love.
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