Daniel's Diagnosis:
Last Thursday, Daniel was finally seen and evaluated by a neuro-psychologist after 6 months of being on the wait list. Yesterday, I went in for the Parent-Feedback appointment to find out what the doctor had to say. So here I am in the middle of the night, up writing instead of sleeping because my head is swimming with different thoughts, and after 2 hours of insomnia I decided I had better get up and get it out of my head and down on paper so I can relax and go back to sleep. To preface this blog entry if you haven't already read my last entry entitled "My piece of Humble Pie" you might want to so this will make more sense.
Daniel was diagnosed with Autism yesterday. He also has sensory integration issues, fine motor delays, hyperactivity (not ADHD yet), he is too young to properly diagnose that one. The hyperactivity "aggravates" his other symptoms often leaving him more frustrated and angry. He has "spacial issues". During the testing he wasn't able to close his eyes and remain standing upright. The doctor said it is like he is not aware of where is body is in relationship to the things around him if he can't see them. Which would explain why he has absolutely no understanding of other people's "personal space." He has social issues and does not pick up on things like social or facial clues, or other people's body language. He is excited when any adult gives him attention or wants to play with them, but doesn't understand that he can't climb all over them and invade their personal space. Apparently with other children like Daniel they latch on to their Primary caregiver (being me in this case) and look to that person to help them with everything including telling them how they should feel, or what to think. Which is probably why Daniel is stuck to me like glue. He is with me all day everyday, my little shadow, and he wants me to help him with or do everything for him. This makes it extremely difficult when I have to go somewhere that he cannot be, because he relies so heavily on me to help him function in his day to day life. This is probably why I am "not allowed" to do things like take a nap. Even with my husband home on the weekends if Daniel finds out I am napping he will pound on my door and cry "Mommy! Let me in!" Yet when Daddy naps or is sleeping in the morning he has no qualms with leaving him alone. So I have taken to laying down on the couch and drifting in and out while Emily naps and Daniel watches a movie so I can get some rest. Being pregnant with #5 I feel like sleep is always something I am in need of.
The positive things that we discovered because of this testing was that we now know he has a good I.Q. The average for children his age is 100. He has an I.Q. of 103. He also has a great memory. This is one thing he has gotten from me. Especially during my years in school memorization came easily for me and helped me not only in learning, but in testing. So because of his cognitive abilities, and the fact that he can speak, he has been put in the category of "High Functioning Autism."
What does all of this mean?
My very first exposure to "Autism" was when I was a teenager and I was asked to babysit a large family for an afternoon. One of their daughters was Autistic. She literally sat in a corner or her room, on the floor, rocking back and forth, muttering to herself. She didn't talk to anyone, she didn't look at anyone. She was severely Autistic. It seems Autism has become a diagnosis we hear all the time these days. It is a broad spectrum including so many different types. It is definitely not a "one size fits all." One thing that is so wonderful about more and more people knowing about this diagnosis is that the help and services offered to these children has come so far. I am grateful that he was diagnosed at age 4 and that he will be able to qualify now for services that will help him become a more successful individual and will help him with the struggles he will face.
"I wanna fix it!"
As a parent, if one of my children gets sick or has a medical issue I want to take them to the doctor and get the treatment or the medicine I need to help them become whole and healthy again. It is hard knowing that there is nothing I could have done differently to change him having Autism. It is also hard knowing that he will deal with this for the rest of his life and there is nothing I can give him or do for him that will "cure" it or take it away. The only thing I can do is give him the tools he needs to be as successful as he is able to be.
God gives us "weakness" to make us humble.
As a family we have been reading a book of scripture called "The Book of Mormon - another testament of Jesus Christ". In one of the books it is talking about an olden day prophet named Either. In it he prays to the Lord knowing that he is suppose to write scriptures and revelations that he receives from God for future generations to read, but he doesn't feel confident in his ability to write well and is concerned that future generations will "make fun of his weakness in writing." The Lord's response to him is "fools mock and they shall mourn; and my grace is sufficient for the meek." He continues on to respond by saying: "If men come unto me I will show them their weakness, I give unto men weakness that they may be humble; for if they will humble themselves before me, and have faith in me, then I will make weak things become strong unto them." I cried when I read this. I felt like it was exactly what I needed to hear. The Lord knows Daniel just as he knows each one of us individually. He knows the things we struggle with, he knows our weaknesses and our strengths and he allows us to go through trials to make us into the people we are suppose to be and fulfill everything he requires of each of us. Now is the time to trust him, to trust his plan and to have faith that things will work out even if I can't fix it and I can't know the outcome right now.
The Plan.
I am choosing not to define Daniel as ONLY my "Autistic child", I am choosing to define Daniel as my son, to keep loving him as I always have, to celebrate the things he CAN do, the successes he has and will have, and to help him in anyway I can to keep moving forward.

All I can say is WOW.....you are patient, kind and just the perfect person to raise,guide and nurture him. Heavenly Father knew exactly what he would need and sent him to YOU as he knew that Daniel would get just what he needed. I know that path ahead will not be easy in any way.....but that you only have to live one breath at a time. You can do this. Pray for strength and get a blessing. You are amazing.
ReplyDeleteThat's a great post Stacy. I actually do ABA therapy with a little girl who has autism. I don't know if you've heard of it, but it's called Applied Behavioral Analysis; I am also taking a class on it right now at BYU as I am majoring in special education. ABA is an amazing program and helps children with autism progress to a point that they "recover" - they are able to overcome their problem behaviors and repetitive behaviors and acquire more appropriate behaviors and social skills. This is a link to a video about it http://www.youtube.com/watch?v=dNcXvAc5gkc You'll see a little girl on there, Alia, she is the one I work with. Because the government is required to provide services for children with disabilities and I know some insurance companies will cover services for ABA therapy I strongly encourage you to look into it and have Daniel begin receiving those services. It works wonders. I'm amazed at how much Alia has progressed and I have loved working with her and other children with Autism, they are special gems to me. Good luck with everything and I hope your pregnancy goes well.
ReplyDeleteValerie
Thank you Valerie for telling me more about this and explaining it to me! I will definitely look into it and see if it is covered by my insurance. He has some repetitive behaviors that I would love to see him receive help with one is hand flapping, while jumping up and down and yelling as loud as he can. I don't know how to help him stop that it is a compulsive thing for him. You will be fabulous working with special needs children I am sure. Grateful for people like you who work with children and help them to improve! Love you cousin.
DeleteOh, Stacy. I'm so impressed with your attitude! You can do it.
ReplyDeleteStacy. Thanks for posting about your experiences with Daniel. What a trial, but what a blessing to have him as your son! Valerie works with a little autistic girl right now (Val is studying Special Education at BYU and is now certified in working specifically with autistic children) she loves the children that she works with and you should definitely talk to her about some of the activities and ideas they use in their program for autistic children. Hope you and your family are doing well. Especially you with your pregnancy!
ReplyDeletelove,
your cousin Allyson
I didn't even see Valerie's comment until now!
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