I have no idea what I was expecting today when I went to the last interview dealing with the diagnosis for Daniel. I knew that he needed to be evaluated again because the last time he was 3 1/2 years old. I was hoping for more specific details dealing with his sensory processing issues – I do know that. I knew that she might say that he showed signs of ADHD. She did, though he did not get that official diagnosis.
His sensory issues cause him to act with same behaviors as those with ADHD.
However, he does not consistently act in those behaviors. I have observed that the behaviors heighten when he has anxiety, or is dealing with sensory difficulties. I listened to her go line by line, looking at me. I did not look up very much my eyes were glued to everything that was typed out. I heard the words go through my body, and I felt comfort in being right about some things, and I felt dismayed at others.
She looked at me and said, “I know the initial shock takes some time.”
Then, she paused and said, “Oh, wait you already know this.” She is used to dealing with first time parents, and parents who know practically nothing about autism and sensory processing disorder. I just shook my head and said, “Yes, I already know, but I have a more accurate diagnosis for his sensory issues now.” His sensory issues have been exhausting for me. They never stay the same, one-day he is hyposensitive, the next day he is hypersensitive. He seeks deep pressure, but cannot be touched.
Then, he wants me to hold him for hours.
The next minute he is standing next to me needing to touch my skin. It changes constantly. I felt relief when I read “Overall Assessment: Daniel is a very complicated boy with many sensory defensives behaviors.” This has made it very difficult for a consistent sensory diet. I have to change things constantly, and try to read him. I felt numb as we discussed some things that need to happen for Daniel. I definitely got my confirmation that this move is the absolute best thing for him, and me.
The words flooded my mind as I stared.
She asked me if I had any questions. I politely said that I needed to read all of it first. She made it clear that if I had any questions to contact her, and I knew that she meant it. I do not think she knew how to read me. I was not sure what I was feeling either – I shutdown. My eyes started to tear up as I got to my car. I needed deep pressure. I needed someone to collapse into. I needed someone who would just hold me and not talk to me, or try to fix me. (Or the situation.)
All I had was an hour drive home by myself and hard blasting music.
The tears rolled down my cheeks, and they turned into uncontrollable sobs. I was beating myself up mentally because I didn’t know why I was crying. I thought, “You are such a hypocrite! Why are you crying?” Then, the words banged in my head, shouting over all the negative thoughts, “I cannot protect him! I cannot protect him!” My whole life consumed my mind. All of the hurts, pains, my broken heart, my intense emotions, being bullied, mocked, misunderstood, abused, all of it.
It came like a maddening force.
All I could do was sob, and think of how I cannot be there with him as I have been. He is too old now. He needs to be out in the world. I hyperventilated thinking of how I am going to have to put him out into this world and everyday beg God, the Universe, the Cosmos I don’t know whomever to, “Please, please do not let my boy get hurt! Please, God in heaven don’t let him suffer these pains. Please!”
I am sobbing again as I write this.
I know that I am highly emotional right now. I know that I have a lot going on, and this is only adding to my stress. I knew that Daniel was going to receive the title of Autism Spectrum Disorder. I knew that she would say he is considered “High-functioning.” I knew all of these things already about his communication, social relatings, his restricted and repetitive interests, and behaviors. I know them all like the back of my hand, yet I forget.
I forget that when he is out in the world that people do not see my dear boy.
I forget because I love him so much, and I see how far he has come. I know what a dear heart he has. I know that the wrong person could totally break it. I know that mean kids who do not understand the consequences of their actions could destroy my boys confidence. I know that the world can be cruel, and hateful. But I forget. I forget because I want to think the best of people. I forget because I do not see any of Daniel’s “issues” as problems.
I forget, and it breaks my heart that I cannot protect him.
He is still unable to articulate well if someone has hurt him. He is still unable to explain clearly, why someone has upset him, or hurt his feelings. He does not know – he only knows it feels wrong. I know exactly how he feels, and the thought tears me up because it is so painful and frustrating. I am not crying because of the diagnosis, it has been here for a long time. I am actually thankful for it because now I have some clear answers and specifics to work on that we were unable to get when he was 3 1/2 and non-verbal.
I have just been hit with the feeling of wanting to protect him.
Seeing my life, living it over the last year, and looking at all I have had to work through is just too much to think about my child having to endure any of that. Any of it! I had no idea what I was feeling, or why I was so emotional that is the reason I sat down here to get it out. I still have tears burning my face. I still feel this penetrating ache, but I also know that my boy is not going to go through what I did.
My boy is not going to be alone.
My boy is going to get what he needs to help him be successful, confident, and able to achieve what he wants to with his life. He will get the support, and understanding that he needs. He is going to be fine, and he is going to know how much he is worth. I will make sure of that. I cannot protect him forever, but I can prepare him. I will prepare him. I think I got most of it out. Sorry for such an intense post.
I am somewhat intense sometimes.
Some fabulous news though, Daniel ate chicken and corn for the first time yesterday! Since he ate those fish from the ocean, he has eaten fish sticks twice now as well. He didn’t want any more tilapia, but I found Ian’s gluten-free fish sticks. He liked them. Another amazing thing is that he has been chewing gum for two days straight. Daniel has never been able to chew gum – Daniel NEVER wanted to chew gum. I am a gum addict; I finally found some that I can chew that doesn’t mess with my head. (It doesn’t have aspartame.) I thought gum might help Daniel with some of his issues like it helps me. It seems to be helping him.
He has started to take notice to what Ariel and Joshua are doing.
He is wanting to mimic them more and participate, initiating more play. He is also doing the same thing with food. He is starting to ask for the same types of foods on a regular basis. He does not always eat them, but he is asking. I give it to him sometimes he tries it, sometimes he does not. The point is he is asking, and wanting to partake in similar things as Ariel and Joshua. I have hope, and my tears have stopped. It was such an overwhelming feeling to think about him hurting in anyway. I have to remember his life looks, and is nothing like the way mine was. Daniel is going to be just fine.
He will succeed at many things, but most of all at being himself.
The radio station seemed to be reading me and playing songs that I like. On the way home the second song that played is one that moves me anyway. It is a hard song, with language, but I relate to it very much. It came on during my full sob session. I am sharing it. I also met a critter on my way into the building. He and I talked a while. He even came after me like he wanted to be my pet. There is a picture of my Boo Bear too, in all his awesomeness.