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.
Friday, February 15, 2013
Thursday, February 14, 2013
The rest of the story...
As I promised yesterday, here is, as Paul Harvey would say, "The rest of the story".
Months passed since we had that wonderful appointment with our pediatrician which told us what we wanted to hear, Patrick did not have Autism. My Mom had asked if any of our boys would be able to go for a quick, long weekend to Hilton Head with her. Due to sports schedules, Patrick was the only one who could go, so we said sure!
At the time, Josh was working for my Mom's company and when Monday rolled around, she and Patrick returned from their weekend in the sun and the exchange was planned at the office. I again, receive a call mid-day from Josh, only this time, I am back at work, and Josh really does not sound good.
He tells me that something is definitely wrong with Patrick. When I asked why, he proceeded to tell me that when he returned from lunch, Nanna and Patrick were back and playing in my Mom's office. When Josh came in to say Hi to his little Diddy, Patrick freaked out and ran behind the door scared.
I really thought this behavior was strange, but more concerning was the fact that my rock was showing signs of REAL concern...did we miss something a few months back...and of course, my reaction was to cry. For the hurt my husband was feeling, and the worry that we thought we had overcome.
Again, we developed an action plan. I made arrangements to leave work early that day so I would be home when Josh and Patrick came home. You know the Steve Martin movie, Cheaper by the Dozen, when the find their son on the train, and the Mom sees him for the first time since he went missing, and she claps her hands and the son goes running tearfully into her arms? Well, this was the scene that was running through my head. This was exactly how Patrick, my loving almost three-year-old was going to react after not seeing his Mommy for three days. I couldn't wait, the anticipation was growing and I could not wait to yet again, prove everyone wrong. There was NO WAY there was anything wrong with Patrick, he was perfect!
Yes, he still carried the gallon jug of milk throughout the house when he wanted us to pour him a cup, and of course he LOVED the teletubbies, and his obsession with tags was so darling! Of course, he really didn't talk that much because with two older brothers the ages of 6 and 4, who needed to?
Well, in through the door walked my husband, followed by Patrick, and, yep, I go down on one knee, with a big smile and say "Hi Patrick!" and you know what he did...
he turned right back out the garage door and ran down the drive way crying!!!! I burst into tears and both Josh and I ran after him. We ultimately got him back into the house and comfortable again, but I felt like my entire world had shattered to a million pieces! And Josh looked like somebody just burned down the last McDonald's restaurant! (stay tuned for more about Josh and his love of McDonald's)
Without saying a word, be both hugged each other, and then, I went into, what Josh affectionately calls "mission mode." I called my pediatrician's emergency after hours hot line and left a calm message that said we needed a referral immediately to our Children's Hospital for an Autism assessment. Also in the meantime, I needed a referral - also to our Children's Hospital for speech and occupational therapy, STAT!
Have I mentioned before how much I love our Pediatrician? She was and is AMAZING. She called me right back and we talked. She faxed over all of our referrals that night. So now, all we needed to do was wait....and wait...and wait...and Google...and wait...
As some of you may already know and understand, I sincerely believe that the word wait is one of the most disgusting four-letter-words there is! And yes, I mean right up there with the F-Bomb!
And wait we did. For 14 months. During which time, I kept Googling all that I could find about signs, symptoms, cures, early treatments. I was able to get Patrick into see a Speech Therapist, as well as an Occupational Therapist. I was so excited! Finally some real professionals to work with Patrick and help us understand what our options were.
Erin and Karen, our dynamic duo, my sanity, our saving Grace! Every Monday I would race home, get the four boys and we all would head on over to Children's and Patrick would work with Erin and Karen, and I would sit there and cry...
I know...here she goes again...I promise I wasn't always and am not always a blubbering idiot. But these early sessions were eye opening, and gut wrenching! Patrick didn't cooperate, he couldn't calm down, he would scream and flop on the floor, and I thought these poor ladies would run for the hills! One of them would ultimately look over at me, pass me the box of tissues and tell me that he was actually doing well, and that we were so lucky.
Through these sessions, I began to learn how we could help Patrick. I began to learn sign language, and began to make picture schedules with paint sticks and velcro became our new best friend.
Well, our assessment day had arrived. Patrick was now almost five. Josh and I both took the day off of work, and headed down with Patrick to Children's. Our appointment was going to last about three hours. We meet with the team that will perform the tests, and away we go.
The first session was with Josh and me where we answered questions about Patrick and his life. Little did I know this would be the first of many times, we would be required to remember the exact age he spoke his first words, what they were, when he took his first step, when we began to notice his development delay, and on, and on...
Next it was Patrick's turn. Patrick and I head into a room with a lady, and Josh stays in the observation room with the other team. The lady asks Patrick to play with her. She has a toy bus with the Little People. Patrick doesn't play with the Little People, he just picks up the bus and starts spinning the wheels. The lady writes something down.
Then, get this, she asks Patrick to "imagine that an alien from outer space has landed and wants to learn how to brush his teeth. She needs Patrick to teach him how to brush his teeth." I'm thinking to myself, yea right, he's 3.5 years old, and doesn't even know what an alien is (yep, I just said my teletubby loving child has no idea what an alien is!) let alone how to instruct him how to brush his teeth - do alien's even have teeth, or hands to use a tooth brush?
Patrick just stares at her...and I begin to compensate, and make excuses, and the lady just looks at me and asks me to be quiet. So I sit there, clearly put out, and wait to see what is going to come next. And, she pulls out this shiny spinning top and starts to spin it. Patrick's head bows and he is fixated! My heart skips a beat...
Patrick's part is done now, and we get about a thirty minute break before we all meet again and we find out, what we are now beginning to see...
The three of us go back into the "team room" and wait for the "team" to reassemble. In walks the three Doctors and the lady. We make room, and I sit on the floor with Patrick. The head physician looks at Josh and I and hands us this over sized manila envelope. She then says the worst four words I have ever heard..."Your son has Autism." when she then promptly follows with "we'll see you in six months." and they all get up and leave us......
"Wait!" I yell, "what did you say?" as I scramble up off of the floor and head out the door. She turns to me and said, "we said you son has Autism, and you will need to come back to see us in about six months." All the information you need you can find in your packet.
Now despite all of my tears and raging emotions, I actually had a tough time processing those four little words. How could this be? I had a normal pregnancy, just like all of my others. Neither Josh nor I had a family history of neurological disorders. Josh graduated with honors from Notre Dame, I made it through The Ohio State University..... we were "normal."
However it was very real. We had our verdict. The diagnosis was clear. Patrick had Autism. The bottom just fell out of our world! There really was something wrong with our beautiful, blue-eyed boy!
Here are a few photos of Patrick at the time. So Sweet!!!
This is where I leave you for tonight. I'm headed out to a very special Valentine's dinner with my handsome hubbie!
More tomorrow, from the corner of Hope and Love...Happy Valentine's Day everyone!
Months passed since we had that wonderful appointment with our pediatrician which told us what we wanted to hear, Patrick did not have Autism. My Mom had asked if any of our boys would be able to go for a quick, long weekend to Hilton Head with her. Due to sports schedules, Patrick was the only one who could go, so we said sure!
At the time, Josh was working for my Mom's company and when Monday rolled around, she and Patrick returned from their weekend in the sun and the exchange was planned at the office. I again, receive a call mid-day from Josh, only this time, I am back at work, and Josh really does not sound good.
He tells me that something is definitely wrong with Patrick. When I asked why, he proceeded to tell me that when he returned from lunch, Nanna and Patrick were back and playing in my Mom's office. When Josh came in to say Hi to his little Diddy, Patrick freaked out and ran behind the door scared.
I really thought this behavior was strange, but more concerning was the fact that my rock was showing signs of REAL concern...did we miss something a few months back...and of course, my reaction was to cry. For the hurt my husband was feeling, and the worry that we thought we had overcome.
Again, we developed an action plan. I made arrangements to leave work early that day so I would be home when Josh and Patrick came home. You know the Steve Martin movie, Cheaper by the Dozen, when the find their son on the train, and the Mom sees him for the first time since he went missing, and she claps her hands and the son goes running tearfully into her arms? Well, this was the scene that was running through my head. This was exactly how Patrick, my loving almost three-year-old was going to react after not seeing his Mommy for three days. I couldn't wait, the anticipation was growing and I could not wait to yet again, prove everyone wrong. There was NO WAY there was anything wrong with Patrick, he was perfect!
Yes, he still carried the gallon jug of milk throughout the house when he wanted us to pour him a cup, and of course he LOVED the teletubbies, and his obsession with tags was so darling! Of course, he really didn't talk that much because with two older brothers the ages of 6 and 4, who needed to?
Well, in through the door walked my husband, followed by Patrick, and, yep, I go down on one knee, with a big smile and say "Hi Patrick!" and you know what he did...
he turned right back out the garage door and ran down the drive way crying!!!! I burst into tears and both Josh and I ran after him. We ultimately got him back into the house and comfortable again, but I felt like my entire world had shattered to a million pieces! And Josh looked like somebody just burned down the last McDonald's restaurant! (stay tuned for more about Josh and his love of McDonald's)
Without saying a word, be both hugged each other, and then, I went into, what Josh affectionately calls "mission mode." I called my pediatrician's emergency after hours hot line and left a calm message that said we needed a referral immediately to our Children's Hospital for an Autism assessment. Also in the meantime, I needed a referral - also to our Children's Hospital for speech and occupational therapy, STAT!
Have I mentioned before how much I love our Pediatrician? She was and is AMAZING. She called me right back and we talked. She faxed over all of our referrals that night. So now, all we needed to do was wait....and wait...and wait...and Google...and wait...
As some of you may already know and understand, I sincerely believe that the word wait is one of the most disgusting four-letter-words there is! And yes, I mean right up there with the F-Bomb!
And wait we did. For 14 months. During which time, I kept Googling all that I could find about signs, symptoms, cures, early treatments. I was able to get Patrick into see a Speech Therapist, as well as an Occupational Therapist. I was so excited! Finally some real professionals to work with Patrick and help us understand what our options were.
Erin and Karen, our dynamic duo, my sanity, our saving Grace! Every Monday I would race home, get the four boys and we all would head on over to Children's and Patrick would work with Erin and Karen, and I would sit there and cry...
I know...here she goes again...I promise I wasn't always and am not always a blubbering idiot. But these early sessions were eye opening, and gut wrenching! Patrick didn't cooperate, he couldn't calm down, he would scream and flop on the floor, and I thought these poor ladies would run for the hills! One of them would ultimately look over at me, pass me the box of tissues and tell me that he was actually doing well, and that we were so lucky.
Through these sessions, I began to learn how we could help Patrick. I began to learn sign language, and began to make picture schedules with paint sticks and velcro became our new best friend.
Well, our assessment day had arrived. Patrick was now almost five. Josh and I both took the day off of work, and headed down with Patrick to Children's. Our appointment was going to last about three hours. We meet with the team that will perform the tests, and away we go.
The first session was with Josh and me where we answered questions about Patrick and his life. Little did I know this would be the first of many times, we would be required to remember the exact age he spoke his first words, what they were, when he took his first step, when we began to notice his development delay, and on, and on...
Next it was Patrick's turn. Patrick and I head into a room with a lady, and Josh stays in the observation room with the other team. The lady asks Patrick to play with her. She has a toy bus with the Little People. Patrick doesn't play with the Little People, he just picks up the bus and starts spinning the wheels. The lady writes something down.
Then, get this, she asks Patrick to "imagine that an alien from outer space has landed and wants to learn how to brush his teeth. She needs Patrick to teach him how to brush his teeth." I'm thinking to myself, yea right, he's 3.5 years old, and doesn't even know what an alien is (yep, I just said my teletubby loving child has no idea what an alien is!) let alone how to instruct him how to brush his teeth - do alien's even have teeth, or hands to use a tooth brush?
Patrick just stares at her...and I begin to compensate, and make excuses, and the lady just looks at me and asks me to be quiet. So I sit there, clearly put out, and wait to see what is going to come next. And, she pulls out this shiny spinning top and starts to spin it. Patrick's head bows and he is fixated! My heart skips a beat...
Patrick's part is done now, and we get about a thirty minute break before we all meet again and we find out, what we are now beginning to see...
The three of us go back into the "team room" and wait for the "team" to reassemble. In walks the three Doctors and the lady. We make room, and I sit on the floor with Patrick. The head physician looks at Josh and I and hands us this over sized manila envelope. She then says the worst four words I have ever heard..."Your son has Autism." when she then promptly follows with "we'll see you in six months." and they all get up and leave us......
"Wait!" I yell, "what did you say?" as I scramble up off of the floor and head out the door. She turns to me and said, "we said you son has Autism, and you will need to come back to see us in about six months." All the information you need you can find in your packet.
Now despite all of my tears and raging emotions, I actually had a tough time processing those four little words. How could this be? I had a normal pregnancy, just like all of my others. Neither Josh nor I had a family history of neurological disorders. Josh graduated with honors from Notre Dame, I made it through The Ohio State University..... we were "normal."
However it was very real. We had our verdict. The diagnosis was clear. Patrick had Autism. The bottom just fell out of our world! There really was something wrong with our beautiful, blue-eyed boy!
This is where I leave you for tonight. I'm headed out to a very special Valentine's dinner with my handsome hubbie!
More tomorrow, from the corner of Hope and Love...Happy Valentine's Day everyone!
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