**WARNING** You should sit down, this may take while!! :)
It has been a while since I have been on here, and life has been busy and full! But what I need to share has taken place in the last two months, though at times it feels as though we have lived 6 during that time.
On June 2nd our wonderful and precious Naomi was diagnosed with mild autism. At times I am not sure I should preface with the word 'mild', because I feel that it minimizes the severity of what we are dealing with. Nor does it guarantee any particular out come for her future...but I already digress!
For quite sometime, I tried to ignore a nagging feeling that something was off with our princess. For over a year autism kept coming to my mind, and I am not quite sure why. All that I did know of autism (which wasn't much) leaned more towards the more intense issues, the kind we see in movies and such. And Naomi wasn't anywhere near that end, but that is what kept coming to my mind. I strongly believe it was her Creator, the One who made her and knew exactly what was going on in her body every moment of every day since her conception in my womb, that was placing that on my heart. Through a series of happenings, which perhaps I will go into further detail on a future post, we got to the point where I made an appointment with a specialist back in March. Then on April 29th, I really believe that God confirmed to me that indeed she was autistic, but we still needed to wait for her appointment. It was on June 2nd, and though at that point I was very certain that we'd be receiving the diagnosis it still took me by surprise. For one, from all I had been told about this doctor, I hadn't expected an actual diagnosis on that day, but rather the beginning of a handful of appointments and evaluations that would eventually bring us to that. And second, regardless of how prepared I thought I was to hear the words 'it's autism' something about having it be official still took me by surprise. Somehow I managed to not shed any tears, to stay focused on what the doctor was saying to us, and controlled enough to even ask her questions I had based on some great advice from a friend that has been walking this road for several years now, as well as some research I had done in preparation. Partly I think it's because God gave me the gift of knowing ahead of time...it's funny, tears were shed and my heart actually broke on April 29th, even though it wasn't 'official' just yet.
One major thing that I did know about autism was that in order to give Naomi the best opportunity to succeed, that I would have to be VERY proactive. This wasn't a situation where I could sit back and wait for doctors, therapists, or any one else tell me what to do next. So as soon as I was buckled back in the car after the appointment IT began. Phone calls, appointments scheduled, reading etc. By the end of that same day I had 5 books checked out from our library, 3 of which I had read by June 7th. In the month of June we had over 21 appts with specialists, therapists, lawyers, school officials etc. One thing I quickly learned was that we had a VERY small window of opportunity to choose, and start, the correct intervention treatment for Naomi, and time became a very precious commodity. Very quickly ABA, IEP, FAPE, ETR, MFE, OT became much more than an alphabet soup before us, and words like stimming, intervention, extinction pepper our vocabulary on a normal basis now. One thing I was surprised to find was how much our reaction to her diagnosis differed from so many of the accounts that I kept reading. Stories of parents emotionally falling apart, crying on end for several days if not weeks, etc were very common in the books I was reading, but that wasn't our reaction at all. I thank God that He had been preparing my heart for this day for some time. Since I scheduled her appointment in March I kept praying about the whole situation and talking about it with some great godly people that He has placed in my life. I really had a peace that if Naomi indeed did have autism, it wasn't a mistake, it wasn't by accident. Rather, that for whatever reason, one we may never know on this side of heaven, this is what was actually best for her life and ours. That this would be the way that her life would bring the most glory to God. It was something intentional; not a fluke, not something wrong. The bible says that God is our creator, and that He takes special care in making each one of us! Psalm 139 says:
For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth
And though to us this is a new path, an unexpected twist in our lives, it isn't for God. We are not having to go to plan 'B' for Naomi's life. This has always been her journey, always been the plan for her, we just didn't know it! Psalm 139 goes on to say:
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
And we have had a sense of peace from this knowledge! We never struggled with the 'why us' or 'who/what is to blame' that many parents seem to. I love this quote from one of the books I read by a Christian counselor and mother of an adult son with autism : 'I don't see Eric's challenges primarily as the consequences of a genetic mistake, a birth accident, or a vaccine injury, although any of those things may indeed have happened to him. But the Bible teaches that his body was designed and the course of his life planned in detail by his loving heavenly Father, long before I ever dreamed of having a son. So if he did indeed suffer brain damage during his birth or from a vaccination, this too, was from the hand of God, who is in control of all of the circumstances of our lives.' - Laura Hendrickson And I can honestly see how God orchestrated events that took place long before I was even pregnant with Naomi (such as meeting my friend Barb) so that we'd better be able to walk this road.
But it has still been a looooong and hard two months. It's funny, Naomi is still the same girl, doing the same things she has always done, yet in so many ways it all seems so different and new. Things got bad for a bit, the pressure of educating ourselves and making extremely important decisions, ones that would significantly affect the rest of her life soon became very overwhelming. Though I handled the diagnosis ok, the fact that my princess has autism ok, the process of what it all meant was difficult. There was heartache and disappointment as people that I had assumed would've cared more, relationships that I had thought were more significant, didn't seem to be concerned at all. The busyness of our days, appointment after appointment, book after book, to be able to quickly make the best decision for her; the pressure of how critical these next couple of years can be for her, and the fact that we can never have this time back; the overhaul of many aspects of our lives, including our diets, in an attempt to seek out different ways to maximize her potential; the absurd costs for the treatment required, all began to overwhelm me and take its toll on my heart. And perhaps the hardest challenge was the toll that this stress began to take on my relationship with my husband. But God has been faithful!! People that I never would've thought have stepped in and stepped up to help us, some good friends all of a sudden became great ones! He has brought wonderful therapists and doctors into our lives to help us navigate this new territory. And my husband came in and began to fight, when I didn't have the strength to. I told him of how I had read that 74% of marriages of children with autism ended in divorce, and he very confidently replied, "We beat the statistic of 80 something percent with the NFL, we will beat this one too!"
Though it was a long month and half, God gave me just the amount of strength I needed to get through it. And now, though at times my faith seemed to falter, and my trust was all but gone, I am seeing Him move on our behalf. On behalf of our precious baby girl. In the last couple of weeks a lot of things have began to come into place. I found out our current insurance plan is one of very few that may actually cover some of her therapy. We have found some other sources for funding as well that we are currently applying for. And some awesome friends of ours orchestrated a 'mini-extreme makeover' of our home so that we can put it on the market. We plan on downsizing so that we don't have to worry about funding for Naomi's treatment in the future. We have been talking about this for a couple of years, since before Jerod decided to raffle his Super Bowl ring for charity. It was something God was putting in our hearts, and the situation with Naomi was the last push we needed to actually do it.
Though we seem to be getting to the other side of a huge storm, I know that this is still just the beginning. And we still have a long way to go. Right now, my heart is at a good place, I am encouraged to see things coming together, to see God moving on our behalf. But we still need lots of prayers. For those of you that have been following along with us for a while, please keep praying, and those that are just finding out, please add us to your list!
We are quite aware of the reality that Naomi may always be limited by her autism, but we also know that her overcoming those limitations can be a reality! We want to work hard to do the most that we can to help her. But we want don't want to lose sight of how wonderful she is, just as God made her! How wonderful she is today, even with the many issues we are dealing with. We don't want to focus so much on the outcome that we want to see, that we miss out on the precious gifts God has for us along the way! I will be writing more often in our blog, as a means to journal our journey, to ask for prayers, to keep track of her progress, to share my burdens for those that might want to come along side us!
Our current prayer requests are for the final details for the funding for this first year of her program to come together. It will cost us $50,000 a year to provide her with the intense early intervention therapy that has been proven to result in significant gains for children in Naomi's situation. Also, for our house to sell quickly! It will be hard work to maintain it after our friends spruce it up for us. We also need for it to sell so we can be sure that moving forward we can fund her therapy without any hesitations. If our house doesn't sell quickly, we will also need funding to finish our basement so we can have a place designated for her treatment sessions. (more details on this later, but the most economic option was a home-based program. Believe it or not, there was programs that cost even more!!) And we'd like to have this all settled soon so that we may also get a puppy for Naomi. More on this on another day as well...but she loves animals, and dogs in particular really draw her out and engage her!
Also please pray for strength for us, me in particular, in handling all of this. It will be a road with many ups and downs, and I know at times more than others I will need some extra support. And for Naomi, that she would assimilate as well as possible to all the changes that will be taking place in her daily schedule very soon!!
There is still so much more to share in regards to all that has been happening, so check back soon!!
