M.O.M.

Doctors and medical professionals have not been my friends lately. To say that I have been upset, frustrated, and overwhelmed is a HUGE understatement. I don't even know where to begin. I've been contemplating on what to write for days because I know I need to get it out. I know, in some strange way, that if I throw it out into the blogosphere then I will feel like for once someone, anyone, is listening to my cries for help. Because I am crying out and we need help! I have found myself crying randomly the last couple weeks. I've been in church and tears just start streaming down my face. Then the grocery store, tears. Driving, more tears. Watching your child struggle is possibly, no it is, the worst thing to endure. Anderson is such a strong boy. He has a huge heart. He loves everyone. He just struggles. I struggle. I need more patience; he deserves a more patient mother. 

We recently took a trip to Utah for Joe’s brother’s wedding (a different post). While there, we were able to set up an appointment for Anderson to be seen at Primary Children’s Hospital for some testing. Long story, he was diagnosed with Auditory Processing Disorder. As far as the testing goes he has great hearing (although it is slightly suspected that he may have in and out hearing loss, MAYBE). Well, the people we are working with here, where we were referred to when he was diagnosed with Autism last year, wanted to sedate him to check his hearing and yada yada but instead the Audiologist referred us to Primary Children’s because, well, she thought it was a ridiculous thing to do after having had such a great hearing test and passing. This new place, NNH, they have diagnosed Anderson with Disruptive Behavior Disorder, NOS. Our opinion is that it’s ridiculous and they aren’t seeing him correctly. I think they are seeing him as a trouble maker and defiant. He’s NOT!*

For example, when he’s asked to share, he sees you as a thief and that he will never see his toy again. When a kid hits or even bumps into him it’s either the end of the world or he thinks that it's an invitation to start a hitting game (which he wholeheartedly believes exists).
 
A couple days after returning home from Utah, he had another assessment. He has been diagnosed with Sensory Processing Disorder, too. An example would be that when he plays this “awesome” hitting game, a punch from him is registered as him giving a small pat or push. Sounds fun, right? That is until someone has a bloody nose and it’s typically not Anderson that’s bleeding. He doesn’t understand his strength. Something that is warm or room temperature to us is scalding to him. What’s cold to us or even freezing is just right to him; Hence the reason you can find him running around outside with just underwear on in the dead of winter . . . laughing. He organizes (lines up) everything from his toys to the aisles at Wal-Mart. I don’t mind, it keeps him busy. He loves to be at home because he feels the most secure here. He doesn’t like to leave the house unless he’s going to go Bud’s house (his cousin’s house). Even church, he hates it. We haven’t figured that one out yet. We talk about church a lot with him to get him excited about going but, NOPE! I hope his teachers don’t take offense; it’s just how he is. Who knows, it could be that it’s too hot in his classroom or he doesn’t like the feel of something in the building. I’m sure when he is able to he’ll let me know.

I’m not sure where I am going with all this except that he has been diagnosed with 4 things and I’m so lost. Yes, it’s Autism. No, it’s not Autism. Yes, he has Disruptive Behavior. Another will say that one doesn’t make sense. Sensory Processing Disorder (SPD) makes perfect sense, though. I’ve known that for a while, the hot/cold thing kind of gave it away. But then I’m told that kids with Autism can have sensory issues but children with SPD aren’t Autistic. HUH?! Maybe I’m the only one that sounds ridiculous to, but whatever. Auditory processing is a new one for us. It makes sense, because we’ve thought, along with others, that he has had hearing issues since he was 9 months old. Auditory Processing Disorder (CAPD/APD) has to do with how his brain processes what he hears. I’m still learning about it but that’s a decent description for now. He is incredibly literal. He takes everything literally along with the fact that he sometimes doesn't quite piece together what he is hearing very well. A good example of how his brain works is, we were talking about how Tatum is such a content baby and he jumped up and said, “It’s gonna be a big one?!” The front door was open and he proclaimed, “we’re gonna build it outside?!” Get it? Content/Tent. Also, I said once to, “Eat your food” and he got upset because he thought I said, “eat MORE food”. How frustrating would life be if that were how you heard the world? Don’t even get me started on this device they have to help him with this “hearing” issue and how Medicaid won’t cover it and oh, yeah, it’s only $4,400!!!!!!!!!!!!!!!!!! Stressed is definitely an understatement. Personally I believe he is Autistic. Most likely high functioning or close to it.

As a friend told me once, I don’t care how many letters these professional’s have after their names, I am M.O.M. and I know my son. I LOVE how they take him in for testing for 10-15 minutes or so at a time and they come up with this off the wall description of him and take that as hard fact. REALLY! So, the hours and years I have spent with him since the moment he was born means nothing! I’m his mother, I spend probably 95% of my time with him minus sleep and “they” are the professionals? I call BS!!

According to Autismspeaks.org, Autism consists mainly of 3 areas:

“Autism spectrum disorders (ASD) are characterized by social-interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors. However, symptoms and their severity vary widely across these three core areas. Taken together, they may result in relatively mild challenges for someone on the high functioning end of the autism spectrum. For others, symptoms may be more severe, as when repetitive behaviors and lack of spoken language interfere with everyday life.”

I can make an argument for each area based on how Anderson shows those in his everyday life. I think I’m gonna try and get them to test him at home where he is in his most relaxed and comfortable state so these “professionals" can see the real Anderson.

People ask me why I “need” a diagnosis. I don’t, it’s the rest of the world that does. To get the help he needs, we need to get the correct diagnosis so that Anderson can succeed in life and be the best that he can. I don’t want to change him, I want to know how to help him succeed. Why do parents all over the world read parenting books or listen to physiologists about child development? So, that they can help their children learn and grown. 

Along with all of those stresses, I have been diagnosed with Schizoaffective Disorder. As strange as it sounds, I am more upset about Anderson's diagnoses than my own. I guess my challenges make perfect sense to me since I live in my own mind, but I have to figure out Anderson's little by little.  

*Now, I’m gonna put this out there so everyone knows. I am not one of those mom’s who thinks that this diagnosis excuses his behavior. My kids are not perfect angels. I don’t believe everything they say. I know that there are plenty of mothers out there who do this. I am NOT one of them. I know the difference. So, when I say that Anderson is not defiant and he’s not a trouble maker it’s not that he never does anything wrong. But it’s with a different outlook on life that he makes the majority of his mistakes. Anderson doesn’t see the world as we “normal” people do. It’s skewed.