All about Grant . . .

This may be one of my more serious posts. (And one of my longer posts, so grab a cup of coffee and settle in!) Today I've decided to use the blog to dispense real information. I don't want it to seem too heavy though, because we are all doing great.

The short of it all is that after waiting five months we finally got Grant in with the Developmental Pediatrician last week. The doctor was great and very thorough. He was wonderful at interacting with Grant and putting Grant at ease (after we left the appointment, Grant asked when we would get to go back!). In the end the doctor diagnosed Grant with PDD-NOS (more on what this is later) and ADD. The doctor indicated that he believes Grant's prognosis is very positive, even suggested that there is a good possibility that Grant will outgrow most or all of his symptoms in time.

So, what I want to do in this post is tell you a little more about Grant, PDD-NOS, what this all means, and how you can help and support Grant and us best. I decided the blog was a good place to distribute this information because for the most part the people who read this are people who love Grant and many of you spend a lot of time with Grant. We have been very fortunate over the past few years to have gathered a great team and support system around our family that has helped us identify and treat the various issues that Grant has faced. I hope that sharing this information with you will serve to strengthen the network of support around Grant and help those of you who love him to understand him a little better.

First, about Grant . . . For those of you who do not get to spend much time with Grant, he is one of the smartest, most polite, and most tender hearted four year olds you will ever meet. He is loving and has a great sense of humor. Grant loves spending time with his family, playing outside, cooking, playing on the computer, reading, swimming, and teasing his little sister. Grant has taught himself to read--it's really amazing how well he reads. He is an amazing kid. We are so happy that he is our son and we wouldn't trade him for the world!

How did we get to where we are? When Grant was approaching his second birthday we began to have some concerns about him, primarily in the area of language development. At that time he also had some sensory issues . . . looking back we can identify more issues now than we were able to acknowledge at the time. (Nearly all of his sensory issues are now gone.)It is always hard to know what is just part of a kid being a quirky kid and what may actually may be a reason for concern. When it is your kid, you so want everything to be ok that you are inclined to err on the side of each "symptom" (what an awful word) being just a "funny little thing about Grant". As I said, we are very fortunate to have people in our lives that are both very well educated and full of love for us and our son. Our Parents as Teachers educator happens to be a good friend of ours, and though I know it was hard for her, when she had concerns about Grant's development, she very gently suggested that we have him evaluated by Missouri's First Steps early intervention program. We did and found that he had developmental delays in several areas, most concerning of which were his speech and social skills. Through the First Steps Program, Grant had a Speech Therapist, an Occupational Therapist, and a Special Educator come to our house for weekly visits. Grant made significant progress in all areas.

When a child turns three they are finished with First Steps and are moved to the local school district for any necessary therapy. Grant qualified to attend Liberty's preschool, and we have had an amazing experience with the school. Throughout his first year in preschool, Grant made amazing strides in all areas. We were thrilled. Up until this point we had chosen, for several reasons,not to have Grant diagnosed with anything other than the generic "Young Child with a Developmental Delay". We made this decision in part because we didn't need a diagnosis. He was receiving all of the special services he needed without a specific diagnosis. (When a kid hits kindergarten or first grade, a diagnosis becomes more necessary in order to get the school district to provide the appropriate therapies.) I was also very hesitant to have a label put on him. I didn't want people to define Grant by a diagnosis. Truth be told, I kept hoping he would grow out of all of his symptoms before he needed a diagnosis. Finally and honestly, I just wasn't ready emotionally to deal with a diagnosis.

By the time this past summer rolled around, Travis and I arrived at the point where we were ready emotionally and otherwise to seek out a diagnosis for Grant. There were several factors that helped us over that hurdle: 1. Grant had made such amazing progress, that a diagnosis didn't seem nearly as daunting. He was becoming more and more "normal" everyday, so regardless of what he might be diagnosed with, his future looked very positive. 2. We knew we needed to start thinking about kindergarten and the fact that a diagnosis would give us much more leverage with the school district. 3. As Grant's language and social skills improved, his symptoms began to look more and more like ADD. If you read a list of symptoms for ADD, nearly all of them describe Grant to a tee. On an emotional level, a diagnosis of ADD was far less scary than the diagnosis of Autism that I had secretly suspected for a long time. Now that I have come to terms with things a bit more, I can see that Grant's issues are more complex than a simple ADD diagnosis. 4. While so many other things were improving, over the summer Grant's sleep issues got much worse. Simply put, Grant has insomnia. He simply can't sleep. This summer I really began to feel that the sleep issue had hit the point that it was not only inconvenient, but all out unhealthy for Grant and for our family. We needed help. 5. Once again, I have to say that the support team that we have played a huge role in helping us prepare for a diagnosis. Grant's teachers and therapists at the Early Childhood Center expressed such love and hope for Grant that they empowered us to be better advocates for our child. We knew that seeking a diagnosis was a part of that advocacy.

Seeking a diagnosis . . . healthcare in America is a strange thing. We have amazing hospitals and doctors, it's just hard to get in to see them. The first place we looked to take Grant was Children's Mercy Hospital, one of the top children's hospitals in the nation. Children's Mercy said they would be happy to see Grant . . . in six months. (After finally coming to terms with seeking a diagnosis, we really didn't want to wait that long.) They also informed us that our insurance wouldn't pay for the several thousand dollar evaluation (yes, several thousand dollars just for the evaluation . . . don't even begin to think about the cost of the treatment). I was discouraged by the wait and the cost. Although I will say that here again I was reminded of what a great support system God has given us. When we told a dear friend of ours about the situation she replied quickly and sincerely, "Don't worry about it. If that is what Grant needs, we'll find a way to get it for him. I'll work with his grandparents and we'll have bake sales if we need to!" Sounds like a silly idea, but her decisiveness on the matter was more empowering in giving me the right mindset to be an advocate for Grant that she will ever know. We decided to forgo the bakesales for a while and took Grant to a psychiatrist recommended by our insurance. We had the most awful experience imaginable. We visited the office twice and I am frustrated with myself that I didn't pick Grant up and leave mid-visit. I now suspect that our insurance recommended this doctor's office because they are cheap rather than good. Long story short, we were then referred to a developmental pediatrician who used to work at Children's Mercy but now has his own practice. We still had to wait five months to get in, but after the bad experience at the psych office, we decided that maybe the good doctors are worth the wait.

Turns out we were right and the good ones are worth the wait . . . or at least that seems to be true in this case. Dr. Hoffman was gentle, patient, thorough, had a sense of humor, and intuitive. He connected with Grant and seems to be good at what he does. As I said, in the end he diagnosed Grant with PDD-NOS and ADD. PDD-NOS stands for Pervasive Developmental Disorder, Not Otherwise Specified. That's a lot. Basically what it means is that Grant has some developmental problems but they are not such that they fall into another category such as classical Autism or Asbergers Syndrome. Grant does have characteristics that one thinks of in relation to Autism. PDD-NOS is on the mild end of the Autism Spectrum. There are a lot of misconceptions of what the Autism Spectrum is, so in the next week or so I will post more detailed information about the spectrum and about PDD-NOS. (Travis and I feel that Grant is best served if those who spend time with him understand who he is and how his mind works.)

What now? Well, Grant is enjoying his second year of preschool and is doing great. He continues to see a speech therapist, occupational therapist, and a special educator. They all love Grant and are very optimistic about his future. We fully anticipate that Grant will continue to do wonderful in school. Like all of us some things will come easy to Grant and somethings will be more challenging. Right now, reading and math skills come very easy to him. He is sharp as a tack and remembers anything he hears or sees. Social skills and ability to focus on a task are more challenging. We work through it though. As I mentioned above, we are hopeful that at some point in elementary school he will outgrow most or all of his symptoms of PDD-NOS and will be essentially indistinguishable from other kids his age--except that of course, he'll be cuter and smarter (just my biased opinion). We look forward to him playing sports and musical instruments if he wants to. We think he will have friends, grow up, go to college, and have a family one day.

Why am I sharing all of this? Travis and I would like to enlist your support. One of our biggest fears in having Grant diagnosed was that people would see Grant in terms of his diagnosis as opposed to seeing him for who he is and all of the potential he has. We ask you to relate to Grant himself and just use the knowledge that he has PDD-NOS as something that helps you understand how his brain is wired. Most of all we ask you to believe in Grant. Have high expectations of him. We have all been inspired and empowered by people who believed in us. Grant will always have two very loud cheerleaders in Travis and I (although I'm sure that Travis would hate being called a cheerleader!). We ask that you join us in cheering Grant on to great things with his life!

God has blessed us with wonderful friends and family. Thanks for all you do for us!