“What is right for one soul may not be right for another. It may mean having to stand on your own and do something strange in the eyes of others. But do not be daunted. Do whatever it is because you know within it is right.” ~ Eileen Caddy
I think I’ve been writing this post for almost three weeks now. It seems like every time I have sat down to do it something else has come up or I just couldn’t figure out how to say what I needed to say. A lot has happened in three weeks though, and my firm belief that everything happens for a reason stands true. I don’t think I was supposed to write it until now.
As many already know, my oldest son Wyatt has autism. (see post here: http://taramc.com/the-spectrum/). Since that post, SOOOO much has happened and a couple of weeks ago I finally received his FINAL diagnosis paperwork in the mail from Shands Psychology Clinic at the Hospital in Gainesville. It arrived literally a few hours before I left town to go to Missouri for work. For just one second I considered not opening the envelope until I got back, because I knew I didn’t have the time to sit down and go over it properly, but that thought was quickly gone as I had already grabbed the envelope and tore into it. Inside was a 14 page document that although confirmed what Drs. and therapists had been saying all along, in an odd way, is an answer to our prayers.
Which brings me to the icky stuff that is gonna piss some people off but the icky stuff is reality and is why I now celebrate all the more with my family and friends over the successes. Now, I’m gonna have to rewind for a minute because some back story is needed. Something else I don’t talk a lot about is where, why, and how Wyatt’s biological father is involved in all of this and how it is effecting things. However, it is a big piece of the puzzle here and I am at a point that I am finally at peace with the reality of it and know how I need to move forward. So, I think its about time I spoke about it, because the longer I deal with it the more I realize I’m not the only person in this type of situation with a special needs child, and that it is isn’t going to end any time soon. Not only have I realized I am not the only one, but that with the growing rate of diagnosis’, there is also a growing rate of single parents dealing with Autism and special needs. Furthermore, I have also come to realize just how screwed up so much of the family court and legal system is right now, and how little attention is paid to the different needs of a special needs child vs. a neurotypical child within a system that is SUPPOSED to protect them and put their well-being first. So, this isn’t bashing anybody, it is just the cold hard truth of a situation that many are faced with.
“Autism is as much a part of humanity as is the capacity to dream.” – Kathleen Seidel
Since before we left WA, Wyatt’s biological father has not supported Wyatt receiving testing, help, or his diagnosis in any way. Not only has he not supported it, he has made many attempts to block the treatment and needed care, therefore causing all of this to take much longer than it had to. I was even once abruptly pulled out of a Drs. appointment at Shands Hospital with Wyatt and told that they couldn’t continue to see him because they had been threatened with legal action if they did so. A few weeks after that, He spent a good part of this summer filing false charges against me in a WA court claiming that I was abusing Wyatt, trying to medicate him, making up his diagnosis, requesting the court take the boys away from me immediately, and trying to get the court to find me in contempt for many things related to it. Why? That is a question for him to answer and He hasn’t yet given one. Quite frankly, it is standard behavior for him though and I do not anticipate that changing any time soon. Despite multiple requests from Drs. and Therapists, who all wrote letters to the court to not force Wyatt go for visitation over the summer, but instead stay in FL and receive the treatment and testing he needed, the WA state commissioner in charge of the case forced me to send Wyatt for summer visitation for a month to see his Father in WA state. I can’t even begin to tell you the internal battle that rages for a mother when she is told she MUST send her child somewhere that she knows He is not safe and being denied help and care that He needs. So what was Wyatt’s fathers first move upon getting him to WA? He and his lawyer gave permission to see a “mental health counselor” for me (yes you read that right. They gave permission for me after I said they could not see or treat Wyatt without his doctors permission. Yes that is illegal.) After just one session, less than an hour, and with no medical or developmental history known with Wyatt this “Mental Heath Counselor” wrote a statement for the court of how he was doing in his Fathers care and how he was suddenly miraculously not exhibiting his autism symptoms that had been there since he was a toddler, like his toe walking for example. All blatant lies. Another dirty tactic for family court systems that far too often is allowed to happen. It saddened me that someone who claimed to be a “counselor” would do such a thing to a child. Of course none of their dirty tactics worked and the boys were returned home to me in as good of condition as could have been expected under the circumstances. It has been a very tough lesson in just how evil people can be and how things get brushed under the rug, so to speak, in the family court systems.
So how do you deal with someone who either doesn’t care about a diagnosis, or who is in such denial over it that they are actually a potential harm to the child? The answer is a simple one, but was a hard lesson for me to learn. You don’t. It is gut wrenching to see someone treat their own child, your child, in such a manner and although you may retain hope for change someday…for the sake of that child you have to keep the negativity, anger, and attacks as far away from them as possible. It is proven that early intervention is KEY to success for children with Wyatt’s diagnosis. If I were to spend all of my time focusing on the attacks that are aimed at us because of the choice to seek a diagnosis and help for him, I would have no time left for what is most important: Wyatt’s needs and getting him the treatment that is so vital to his success. Staying positive is a HUGE factor in Wyatt’s success and I REFUSE to allow anybody to hold him back or bring him down. Just this morning somebody reminded me that “Silence is the best response to a fool.” You don’t have to attend every argument you’re invited to and nobody can force you to and you don’t ever have to allow somebody to abuse you in any way. You deal only with what you have to, and ignore the rest. Not only is silence a fabulous response, so is Faith. I truly believe that God is in control here, and so far despite my sometimes wavering faith and questions, things have all worked out in their own funny little ways.
How do you deal with a family court system that doesn’t listen to Drs. advice or understand Autism? I don’t have all the answers to that yet, but I know as a parent it is my responsibility to educate them as efficiently as possibly on the situation and I could have done a much better job of that. I will definitely be approaching it differently in the future. I made assumptions that people would care or read or take the time to understand things, and I can’t make that mistake again. It is going to be a tedious process and I am sure not a fun one, but I refuse to let my son get lost in the mess of court cases and be just another statistic. I do know, however, that receiving an official diagnosis is vital to success in this area. It takes a great deal of time to go through the process, but without it I would have little protection for my Son within the family court system. I am still in this process and will keep you updated.
“Different, but not less.” – Temple Grandin
So after all of that where is Wyatt now? He is as silly, empathetic, and sarcastic as ever. He is a quieter kid than he used to be and definitely likes his alone time more than he used to. We have an official diagnosis that confirmed what the Drs and teachers suspected, but we also have a great deal of success and improvement shown in a very short amount of time. He currently sees an OT specialist, and Pivotal Response therapist weekly, and we are about to add in physical therapy for the damage to his legs (from toe walking). He has an amazing school and teacher who do everything in their power to make sure he gets the attention and special accommodations he needs to be successful. I met with his teacher this week and did a happy dance with Wyatt outside the school on the playground afterwards. I was given a print out of his current grades, nothing less than a 92%. For a child who last year sometimes spent 3 hours per night doing homework with me a the kitchen table and struggled with grades to nothing less than 92%. It is a victory that many share a hand in and we are so blessed to be surrounded by a support system that has gotten us to that point. From a child who I couldn’t leave at school until this year without him having an anxiety attack, to a productive happy student who although he still has a his bad days here and there, is learning to enjoy academic challenges. He is doing amazing and I am so proud of the little man he is becoming.
(One days worth of drawing from Wyatt at school. He is currently obsessed with Minecraft and we have found drawing helps him focus. So thankful for a teacher that is happy to let him fill his desk every day with all of his artwork.)
“We’re stronger in the places we’ve been broken.” – Hemingway
And finally, where am I at with all of this? I won’t lie… After I got the papers despite the fact that I already knew what they were going to say, I still got in my car and I drove, and I cried, and I drove some more and cried a whole lot more. Seeing it in print adds this weird finality to it. There are days when I see him struggle that I break down and feel that desperate frustration when I don’t have an immediate solution or answer. I don’t think I will ever forget the feeling of sitting in the hospital waiting room while they were doing tests with him for 8 hours, alone, watching all of the couples and parents come and go with their kids knowing that I very well may always be sitting there alone. There are days that it makes my heart ache and my brain want to explode with the sheer enormity of it all and the fears of not being able to give him everything he needs. It’s usually those moments though, that I’m reminded of how blessed we are. We have a diagnosis yes, and yes it may change parts of our daily lives, but it doesn’t define us as a family, or him as an individual. As far as diagnosis’ go…He has the best possible scenario under the circumstances and we have an AMAZING support system, family, and doctors in our lives here. I believe with all of my heart that with the right people, treatment, and support around him He will not only succeed but excel in everything that He does. I refuse to settle for less than anything and everything he could ever dream of.
