Before you think this is just the ramblings of a very pregnant woman, I will put it plainly- Pauly is graduating out of his last therapy today!!!!!!!!!!! We have had Mackenzie coming for 2 years now for in home therapy. She has educated all of us about Autism, she has worked one on one with Pauly to build his anger managment and social skills, and she has helped the kids learn to interact and just have fun together. She has been there through my tears, frustrations, and even anger. She has been there for the girls when they just didn't understand their brother, and today we will say good bye to her.
Here is a summary of our journey.... Pauly was around two when we really starting knowing something just wasn't quite right with him. He used only gutteral grunts and yelling, seemed scared and angry a lot, and couldn't stand to be around people. When he was about three, I asked his pediatrician if we should be concerned and pursue anything; I was at my whits end and needed some reassurance and direction. I still remember her words to me that day, "I think you just have one of those more difficult children, but I believe you are doing everything right, and he will slowly come along." Basically, forge ahead a lone which is what I did. I really wasn't ready for any kind of label anyway; I was too full of guilt that I was just parenting him badly. So, I continued to go it alone, and we dealt with the wrath of his frustration which included holes in walls, many parties/family events we either couldn't attend or would have to leave early, and times when I would hold him for up to an hour while he just raged out of control waiting for my sweet boy to return to me.
About 2 years later, I was with my dear friend who has an Autistic son. I was at a pretty low place and finally just asked her point blank if I needed to be doing something different. She had been so loving with me over the years and always told me that I would know when I was ready for the potential label. We had a wonderful heart to heart, and I began the journey of testing beginning with an Occupational Therapy evaluation.
Pauly was then diagnosed with Sensory Integration Dysfunction. In a nut shell, imagine you are wearing not only a hair shirt but a hair underwear, pants, and socks. Now sit on a stool with only one leg and try to balance. Now turn the radio on but make sure it is in between stations, so it is nothing but static. Stack on that that the lights are very brigh and flicker every so offten and things keep passing your eyes that you must look at. Finally, someone brings you a book to read and wants a recap report in 10 minutes. Are you thinking OVERLOAD? Oh, and you have no way to tell anyone anything about how you are feeling because you have no idea what you are feeling and no way to put it into words anyway.
We started O.T. with Denise, our first earthly angel. She not only helped Pauly develop skills, get stronger, get more confident, but she truly cared about him and loved him no matter what he brought to her each week. She also educated me tremendously and helped me for the first time understand my son. She also pointed us in the direction of having a vision evaluation to see if there were any eye issuses that were making things more difficult for him. He did also do some speech therapy in the same clinic to work on social skills.
The vision evaluation revealed some imature reflexes and other eye issues that were making things more difficult for him. Basically, some of the reflexs that mature during infancy and the first few years of life had been halted leaving a lack of development in certain parts of the brain. His eyes also had trouble working as a team which meant he had trouble focusing and seeing only one of something; lots of eye strain. Pauly completed a 30 week regimine of weekly visits to the clinc to work on getting his brain to finish developing and strengthening his eyes. Therapy was a success although not any of our favorites.
Also during this time, we started pursuing other options for O.T. and began working with the school district to see if Pauly could qualify for special ed. services. He had to go through a lot of different testing related to intellegence, social skills, mental health, etc. and in the end he met the criteria for the educational diagnosis of Autism Specturm Disorder. We then began to look at options for classes and services they could offer him. Their main goal was improving his social skills and jump start him into reading, basically get him excited about it. My goal for them, "Help me paddle this boat."
I still remember the first day I put him on the bus. He was only going to be gone for an hour or so, but he had never been out of my care. It was the first time I was fully entrusting him to someone else's care; not easy. We had been through a lot together, and I was never not there for him. He did great and loved it. We gradually increased his time, and last year he went for half days. Toward the end of the school year we noticed a shift in him, and decided to bring him home. This year he is home full time and is doing great.
Once we got the educational diagnosis of Autism Specturm Disorder, we decided it was time to pursure medical testing. He went through more testing with a pshycologist and did in fact receive the medical diagnosis of Autistic Disorder. The label was finally there staring us in the face. I still remember the whirlwind of emotions, questions, and where do we go from here. But we were thankful at the same time that we were getting answeres to what was behind our struggles.
We then began jumping through the social service system of hoops and were able to get ourselves a county case worker who was another of our angels. She was an amazing gift to us and helped us navigate the waters of services available, funding options, and just general support. At that time, I was a mess of confusion, guilt, insecurity, you name it, and she walked me through it all. Andrea was with us until this past March when she said, "I don't think you need me anymore." It felt good to say that indeed I felt capable and secure to go it without her.
Now, here we are today saying good bye to another one of our angels who has gotten us through some dark and confusing days. We are going to be flying on our own after today, and we couldn't be more thrilled.
Pauly has made some amazing progress, especailly in the last 3 months. I look at him now and just can't believe where we once were. He is maturing and turning into such a fine young man. He and I had a date night the other night, and it was just such a joy. He now regularly tells me that he loves me, and he lets me comfort him when he is sad or hurt. My heart heals a little more everytime; it was so painful when I couldn't comfort him and wondered if I would ever feel real love from him. He is participating more and more in chore and family life around here, and he is turing out to be a great big brother. We see his compassion and patience growing daily. It is just awesome. Our family is healing and not just surviving but thriving.
We are so thankful for all the prayers and support we have gotten over the years, and we ask that they continue as Autism doesn't just go away, and there is still some areas that are a bit rough. God has been so good to us, and we continue to put our trust in Him that He will continue to provide for all our needs, and today we celebrate all He has done for us.
Thank you Mackenzie and all who have worked with us over the years. May God bless you for you compassion and love for children with special needs.
