In early July and to our astonishment and joy, we found out we were going to add to our family. This was a pleasant surprise as we were wanting another child for sometime. We are delighted! It's so strange at times to believe that I'm doing it all over again...being pregnant is such a blessing and adding to our family a huge blessing! Park is going to be a great big brother with his passion to those around him he loves.
But just as soon as our excitement and gitty jitters began at the big change about to come in our lives, our family was also struck by another surprise. Unfortunately, this one was not so pleasant.
Following our family vacation over the 4th of July to the Lake of the Ozarks, I took Park in to see his pediatrician for a throat culture. Since it had been about 6 months since our last visit, his Dr. had some questions and concerns about his development. As we got up to leave the office, she kindly put her hand on my shoulder and told me that she was concerned Park is showing signs of Autism. AUTISM...the dreaded "A" word! I fell back in my seat in tears and hugged Park in fear that her concerns were justified. He wasn't talking yet, didn't show interest in other children, and had hitting issues that at the time, I had simply given up on trying to stop.
As I tried to drive home with tears streaming down my face, all of Park's strange behaviors began to make sense. I remember thinking, how stupid I have been that I didn't consider this as an explanation! When I arrived home I first called my brother who, as stated before, has experience with developmental delays and disorders in children and since we had just returned from a vacation together, I wanted him to tell me that he thought Park was just fine. I wanted his reassurance. Unfortunately for us again, he agreed with Park's pediatrician's concerns. He too had picked up on some very strong autistic like behaviors. He and his wife (who works with children with autism) immediately armed me with professional advice and recommended I read two books and begin working with Park. Those two books, which helped us tremendously were:
- The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders by Mary Lynch Barbera
- Let Me Hear Your Voice: A Family's Triumph Over Autism by Catherine Maurice
So after about a week of feeling like I was mourning the loss of my son and as soon as I received my new reading materials in the mail, I decided that I would do absolutely everything in my power to help my son live a normal happy life. The determination of a mother is truly astonishing...we really will do anything for our babies!
Also, I can't forget to note that we had already begun working with the Early Intervention Program. This is a wonderful program available to EVERYONE in the United States whose child is developmentally delayed somehow or for children with disorders. You pay based on your income and the payment is very little in comparison to the wonderful treatment received. It is a great program and I thank my lucky stars that my new friend Mel (thank you!!!) told me about it back in June. For those of you in Utah, go here for the contact in your area. The determination of Park's language/communication therapist with the Early Intervention Program has helped him tremendously. With only a handful of visits to our home thus far, his progress is remarkable.
We also immediately contacted the Child Development Clinic with the Utah Dept. of Health for a formal evaluation. They are very busy, as our appointment was made 6 weeks in advance with the pediatrician. Park's meeting with their psychiatrist is in a few more weeks.
And continuing on that note, it has only been a short time since we were told of his concerns, since we began diligently working with him, following the advice given to us by those with experience, and I am SO DAMN PROUD to say that our little Park is doing remarkable! He is talking a lot, saying more phrases but still having a difficult time speaking clearly, his behavior has dramatically changed and he loves to play with other children.
I don't know if maybe there was never really anything wrong with Park's development other than a language delay. I don't know whether his behaviors were due to a confusion in his brain or a confusion caused by something we might have done. I don't know what caused it although I do know that genetics plays a huge part. (Park has uncles that also had developmental delays). I don't know much of anything other than that Park is progressing, not regressing. That is all we care about at this point. He is happy, he laughs a lot, he is now playing with other kids, he has stranger anxiety more and more (which is a good thing as before, he would run up to complete strangers). He looks into my eyes more and more everyday and to tell you the truth...I couldn't be more pleased with this state.
We had our first appointment for Park's first formal evaluation last week and it went well. We were there for 2 hours, answering question after question while Park was being observed playing, interacting with other kids and us. To our joy and relief to say the LEAST, the pediatrician (bless her soul) told us she wasn't concerned about Park having an Autism Spectrum Disorder. She, like us, would have been more concerned a few months ago when he wasn't communicating much at all to anyone other than physically hurting himself under distress (all of which are ASD signs) but now the concern is minimal. He obviously does have a language delay but we are working on that.
I could go on and on about the last few months of trials and tribulations with the health of our dear baby boy, but I will save that for another day. Our summer has been a whirlwind of emotions. Finding out we were expecting and then quickly finding out the unexpected made for a rough time. I was so upset for some time and with the nausea of my first trimester, I felt hopeless at times. There were days I was worried that my stress would cause a miscarriage. Thank god for the support of family and friends...and to those who negatively made quick judgment on the cause of Park's condition...well, they are not a part of our lives any more. It's truly astounding the protectiveness that comes into play when our children's lives are being threatened in any way. Once we reached out to others about the news of Park, we of course heard opinion after opinion. We very quickly learned that these opinions were not the first, nor would they be the last of judgments we would get from others concerning the cause for Park's behavior. This is just one of the minor trials that afflict the parents of autistic children. Suddenly our life is fair game for everyone's scrutiny, and everyone "knows" just what caused the problem. Friends, even causal acquaintances, feel compelled to pronounce their opinion as to cause and treatment. If you have a disturbed child, obviously you are in need of everyone's advice, no matter how uninformed. (Catherine Maurice, 1993) At one point I was even told I should look into "cleansing Park" because of the vaccines he has received. Talk about judging...we are no longer associated to this individual as I will never let anyone harm me or my family in such a way...never.
While we know that everyone (well, maybe most people) are trying to help in their own way by giving us their take on our son, but no one...and I mean NO ONE knows and understands but us the behaviors Park displayed for sometime. I remember on multiple occasions telling my husband that Park didn't feel like my child. I loved him just the same, but he truly felt foreign to me. And I was justified! He didn't look into my eyes, he didn't respond like most children his age did, and he didn't remind me of me or my family. All I can tell you is that there was definitely something going on in our little one, but that now he is overcoming those behaviors. He is beginning to emerge.
So to end my long explanation of our hectic summer (and why my blog has been lacking), I want to first and formost thank all of you for reading this. I am so grateful for your support, and so happy with the direction my blog has taken and for its success. I truly apologize that my blog posts have been few and far between but as explained above, my summer has been trying. As many of you know, family always comes first. Any extra time I have is spent sitting down and interacting with Park or resting to help my body and baby #2 grow. But now as I am feeling much better, Park is doing much better and life at the James's is beginning to settle down a bit...I promise to do my best keeping in touch with all of you.
My deepest thanks to all of you,