My Crap-tastic Day!!!!

I know, I know, it has been awhile since I have posted anything; no real excuse, I just haven't taken the time to do it, I have had good intentions, but have not followed through. Today, I was planning on blogging a Christmas letter, telling about our year as a family and highlighting different things the kids have enjoyed and accomplished, but I am no longer in the upbeat, happy mood I was in earlier today. My happy mood came to a crashing halt after a meeting at Zachary's school, regarding his test scores. (My previous post will explain the reason behind the testing, if you don't already know.)

 Let me just say, I was bombarded with a lot of information, that was extremely hard to swallow. It was unexpected information that was difficult to hear. Some of his test scores were great and others not so great! Some I wanted to rejoice about and others I wanted to break down and cry. On top of Zachary's struggle with academics, they found that he struggles with a disorder called, Sensory Processing Disorder. Most kids who have SPD, suffer from Autism as well, but you can have SPD and not have Autism, that is were Zachary falls. He does not have Autism, well, at least that is what we think, we will talk with our Pediatrician and decide if we need to go further with our testing and find out if he does fall into the Autism spectrum.

As they were explaining things that they saw and were explaining the SPD to me, I had so many thoughts running through my head. At first I thought, no, I would have seen this, I have worked with kids who have sensory issues and I have not noticed similar traits with Zachary! But as they went on, it hit me that a lot of the things I had been noticing the past year, maybe two years, makes perfect sense in regards to this diagnosis. I have known or rather had the suspicion that there was something not quite right and I was trying figure it out. I was trying to bring it to the attention of his teachers and his pediatrician, but I kept getting the same answer, "He will grow out of it, just give him time." Oh, how I wish we could have found this out sooner, but at least we are finding out now and we can get him the help he needs.

Although, I did not reach this point of acceptance right away, it took some time, yes, I know, I received the news early this morning and so it really has not been that long, but it still took time for me to handle and accept. Like I just stated,  I am grateful to be aware of this problem, but you can only imagine how I felt right after receiving the news. I am pleased to say, that I handled myself well in the meeting, I remained poised and calm, with my emotions in tact, but believe me, once I was alone, the flood gates opened and I was a wreck! Again, like I just stated in the above paragraph, I started blaming myself, for I did not understand why I did not see the signs for SPD earlier? Was I in denial? Did I have blinders on because he was my son? I have worked with children that have suffered from sensory disorders, shouldn't I have seen the signs? Why God? Why didn't I see it?  If I had seen this sooner he could have been receiving the help he so desperately needed and he would not be as far behind as he is. Why is this happening? Why my son? Right at that moment,  I felt like an ignorant, neglectful, unobservant Mother. I know I should not have felt this way, but I did. Maybe I needed to go through these emotions, maybe I needed to get them out, so I could deal with them and move on and be proactive, rather than feeling sorry for myself and my child. I believe that I needed to come to the realization, that it is what it is, now we know, and now we can get the help Zachary needs to get back up to the performance level he should be at for his age.

Yet, I still can not help but feel alone. I can not help but feel helpless. I can not help but feel that I am standing on the outside looking in wanting so desperately to fix the problem, yet I can not find a way in!  I know I am not alone or helpless. I know a lot of children have these sensory problems and I know that there are many who have the diagnosis of SPD. I know that it is not the end of the world, I know that it is manageable and that as long as we implement a home program and he goes to therapies and his Teacher's at school work with him, he will be fine, but all this knowledge does not make it any easier. It does not take the pain away. I am a Mother and I can not help, but feel these raw emotions. I feel as though no one understands my sorrow and pain, even though I know that many are going through the same thing. Right at this moment I am completely frustrated, soon I will be over all these feelings of remorse, but for now I am completely and utterly frustrated.  I know that I will soon understand the reasons behind these complications and be able to see that they are small trials compared to other's trials, but for now, they seem to be huge mountains that I can not climb!

 I can not help but feel that I am being punished for something I did. Again, I know that is false, I know that this is not a punishment, rather it is a blessing. Dealing with all these emotions and pondering on all these things, has reminded of something a dear friend from high school told me shortly after I had Payten, her quote was, "Please do not take this the wrong way, but it could not have happened to a better person." This statement was referring to me being the Mother of Payten. I have pondered a lot about this statement and what my dear friend meant. I have come to the conclusion that she was trying to help me realize that I am indeed the best person for Payten and now, with regards to Zach, this statement still fits, for I am the best person for him as well. I have a very understanding and compassionate heart, please do not get me wrong, for I am not stating this to boast of myself or praise myself, rather, I believe these are talents/gifts, that the Lord has blessed me with and I believe he knew that because of these talents/gift, I would be the best mother for these children. He knew that I would be understanding and loving and that I would do everything in my power to help these two very special spirits reach their full potential and care for them in the best way possible.

 It may be hard and I may feel alone at times, but I know that this was my mission on earth. I know that it will all work out in the end. I just have to remember to remain faithful and put my full trust in God.  No matter how scary it may seem to me right now, it will get easier. I can do this people!!!! My Heavenly Father's believes in me, so I will believe in me! I can help Zachary! I can make his environment one that will help enhance his life and his learning! I will be the best Mom I can be! I will get through this and I will be stronger for it!

Now, going back to the meeting and the findings that they found, a lot of the things that the Teacher's and Therapist's brought to my attention are things that can fall into the GTP Cyclohydrolase Deficiency, which is what Payten suffers from. So on top of all the heartache of finding out there was a bigger problem than expected, I now have the fear that Zachary may suffer from GTPCD as well. It makes perfect sense, because in most cases, GTPCD does not start rearing its ugly head until around 8 to 10 years of age and Zachary falls right in the middle of this age group and a lot of the issues he is having have not been noticeable until about mid school year, last year. So, I have made an appointment with Dr. Cook, Payten's neurologist, to further discuss the matter at hand and to have Zachary tested for GTPCD. There is hope in all of this, for there are different severity's of GTPCD and most likely, Zachary, if he does have this disease, will have the mild form of it, therefore he will respond to treatment and hopefully live a full and normal life, filled with many possibilities. But with this also comes the possibility and fear, that Zachary could end up in a wheel chair or suffer from a moderately to severe gait (walking) issue, because this disease can severely affect their walking. They can start degressing in areas and start losing abilities that they use to have, which scares me greatly.

Right now, Zachary will receive O.T. (occupational therapy) at school, along with special education/the resource program, which is a program that helps children learn in the best way that is fit for them and at the pace that is better fit for them. This all brings me to my next biggest fear, it is that this may be financially draining for us. He will need outside therapy, meaning outside of school therapy such as O.T., P.T. and possibly Feeding Therapy. The problem comes that he will not qualify for long term care like Payten does, so that will mean that we will have a lot of out of pocket cost, which could add up to $120 to $160 or so dollars a week, but alas, we will do what we need to do and put our trust in our Father in Heaven that he will help us through.

I have faith that the Lord will help us, he has helped us thus far with Payten and I believe he will help us with Zachary too. Life is not easy and there have been many times, where I have wanted to throw in the towel, but I can't do that, for I have to remain strong, because I am all my children have and they need me. I have to remember that this life is not the reward. rather it is the test, the reward is yet to come! Please pray that these feelings of pain and sorrow will go away and that, Joseph and I will feel at peace with all of this. Pray that we may feel  the love that our Father in Heaven has for us and that we may come to an understanding as to why we are being faced with these difficult challenges. Pray that we will find all the answers we need to find for Zachary, so that we can help him in the best way possible. And lastly, please pray that we may know that we have people surrounding us that love us and are there for us whenever needs be. We truly need these prayers, for we really are struggling at this time and we need all the help and love we can get in order for us to push through. Thank you all for your friendship and kindness, we are truly blessed to have such good people surrounding us. Let's hope that my next post will be more upbeat and bright, with a lot better news!!!!