quirk·y/ˈkwərkē/
| Adjective: |
| |
| Synonyms: | peculiar | |
Yep, that's my boy! He definitely has quirky charm! When I first thought my son had a problem, I didn't understand the exact problem. So, me being "the one who researches mystery illnesses and issues with google", came up with nothing. But I knew in my heart, that something was different.
My son was 18 months old and he was not acting like he should at that age. I brought this up to my husband and told him about how the pediatrician wanted us to take him for some evaluations. I should have listened to my gut feeling and not my husband's advice. He said, "There is nothing wrong with our boy. We do not need to have him evaluated for anything. You are just being paranoid." From about 18 months to 3 years, he continued not to talk much and avoided eye contact. He played yes with a lot of imagination but it was as if he was in his own world that I refer to fondly as "Eli World". His play was very repetitive in that he would pretend he was inside of a Dora cartoon, and when he would talk, it would be either singing Dora songs or repeating dialogue from the many Dora shows. Now, he watches more than just Dora but each week he gets "hooked" almost like how the old record players used to skip. He would often pull out cans of veggies or soup out of the kitchen cupboard and would stack the cans to make "Big Towers!".
Eli requires a strict schedule and what I mean by that is any change in routine puts him into a tailspin. He becomes quirkier. I've also noticed his "quirky behaviors" come out when he is really tired or overstimulated. Often, (this even goes back to when he was younger) he will hum to himself and/or will spin in circles flapping his arms. He does not maintain eye contact at times and when you take pictures of him he often will avert his eyes to a different direction. He has no impulse control at times i.e. jumping off of the top of the couch to the floor or running out the front door every morning because he thinks that because his shoes are on and he is ready that he can just walk out the door without Mommy or Daddy. When it gets to be too much for Eli, he hides in many places; under the kitchen table, in his room under a blanket, behind the bushes to our church entrance or the tall ornamental grass in the summer time, and yes even behind the tents set up for VBS. But that's my favorite quirky boy, what other choice do I have but to love him?
Fast forward to October of last year, I was able to get him an evaluation through our school district while awaiting various appointments through Children's Hospital. The teachers agreed that something was off with Eli but they would not tell me their honest opinion because they are not doctors. Their suggestion was to go through the speech evaluation first thing and then get back in touch with them. They even promised that they would be seeing Eli again soon. Another month goes by and we finally got the speech evaluation. His diagnosis was a speech and language delay; he tested at a 2 year old level (he was 3 years and 4 months at the time of testing). That alone got him his IEP and a spot for preschool. However, Eli did not start school until March, 2012. There was other paperwork and also an appointment with the DBPP or whatever that department is called at Children's.
January, 2012 we met with a nurse practitioner at Children's with Eli, my husband, and myself. She immediately dismissed the notion that he could be on the spectrum of Austim. Her exact words to me at the end of the appointment was "He does not have Autism because he communicates with me and he is communicating with you." I was enraged! I held it in and did not become unglued. I just smiled and said "While I appreciate your opinion, I do not agree with you and I would like to do some further testing. And actually, would like a cognitive test done."
February, March and April of 2012 is a great big blur to me when I think back to everything. Eli was still quirky and still the same. During that time we endured 2 parts of the cognitive testing. The parent session where it was pretty obvious to the doctor that my husband and I did not agree about Eli but we both agreed there were some problems. Then came the 2nd part, Eli's actual evaluation. Because this area hospital and this particular department is so overloaded with patients, I was not able to get the results until July! His test was done in April!!! So what happens next, I MISSED THE APPOINTMENT! Ugh!
I ended up rescheduling and had an appointment scheduled for August 28th. I go to the appointment that morning and I end up getting stuck in over an hour worth of traffic (didn't realize it was UC's first day back!) and I am calling the office from 8 am to 8:10 am; noboday answered! Their phones were not on until after 8:10 am. So I call and ask if I will still be seen. The customer service person that anwered the phone was not nice about it and gave a nonchalant, attitude filled response "Probably." So I say, "Okay, let's see if I can make it on time." So I call back at 8:20 am and got the same person. I asked her if I could still be seen, explaining through tears that I needed to have this appointment because of his IEP and I can't take anymore time off of work. She says "HOLD ON" with yet again, an attitude. I am crying now even harder and I say out loud to myself "YOU ARE SUCH A FAILURE! WHY CAN'T YOU GET ANYWHERE ON TIME? WHY ARE YOU SUCH A BAD MOM?" Finally, the CSP gets back on the phone, "The doctor will still see you if you get here before 8:30.", with the same attitude problem as before. I say to her, "Thank you so much for checking on that for me! And I will get there by 8:30." Yay! Something might just work out. I pull into the parking garage and it is 8:25. I run out of my car and dash to the elevators. I get up to the 3rd floor and run through the doors and go to the automated check in desk and fiddle with that and then it says "You must sign in with the receptionist if you are past your appointment time." I turn to the CSP and say "I'm finally here!" She gives me the look (you know, the I have the power kind of look) and she says, "I'm sorry but I don't think you can be seen. It's 8:29 but let me go check." I am devastated and start hyperventilating and the sobbing cries come back along with the CSP and she says"I am sorry but you can't be seen today." It was like the world came to a brief stop, like a water pot getting ready to boil over and then BOOM! I became unglued completely! I screamed at her, "It is 8:29 am and I am here before 8:30 am. This is the worst service that I have ever encountered. If this were at my office, the patient would be seen!" She says, "Hold on. Let me go get Dr. so and so's nurse." My face is red and I go out of the waiting room back into the hallway slamming the doors and punch the wall. At this point, I am sobbing, hyperventilating, and have snot, lots of snot running down and out of my nose! (Not one of my finer moments in life!) The nurse comes out and I completely explode on her, pouncing on her like my cat does with her catnip toys. (not physically but verbally) She really was professional and kept her cool so well. My temper tantrum did not work and I think at that point someone may have called security. I left.
The humor in all of this... I was about to start "Unglued" with my Lifegroup at church the very next day and the OBS through Proverbs 31 in the next week or 2. (I really could of used this study that day!)
A few weeks later, I sucked up my pride and went back for another appointment this time with my BFF for moral support on September 17, 2012. I even apologized to that poor nurse that I had pounced on! We are in the appointment and we are going over the test results, mostly average or above average. Now, this doctor that I am going over the results with has NEVER, I repeat, NEVER, had a face to face appointment with my son. She finishes with, "At this time, my colleagues and I feel that your son has no Autism." I should have been happy with that. Oh No! I looked at her and smiled sweetly, "Well, I don't agree with you and your colleagues. That is why we are seeking a second opinion." Her diagnosis was disruptive behavior disorder. My son does not have disruptive behavior disorder. Sorry but he does not. I am not in denial. My gut feeling is telling me to push forward with a second opinion.
My point being in all of this....I WILL NOT GIVE UP! When it comes to my kids, I will be their voice and their advocate until the day I take my last breath. I will fight for them.
More importantly, how have I changed since beginning the "Unglued" study and to now after all of the above?
I have learned that I AM A WORK OF ART WITH A MESSY ROOM AND YES SOMETIMES AN EXPLOSIVE REACTION WHO SHAMES HER SELF!
I am striving every day to make imperfect progress. I am learning that I can control my emotions. I know that I trust God. The day I blew up, it wasn't all about me and I took on the perspective of the CSP and that nurse. I wonder how many times they were yelled at that day or the day before. They were only following company policy even if I don't agree with their policy.
I have replayed that day over and over again, I have brought that day to God and I have left all this worry over Eli to God. In the end are all these battles really about me? No, it isn't.
2 Chronicles 20:15b NIV84
This is what the Lord says to you: ‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s.
Chapters 7 and 8: I am not even that far in this study! However, I am looking forward to finding out about the "Biblical Procedure Manual" and thumbing through to chapter 8: "When discouragement looms close, God's power moves in closer." gives me so much hope!
Personally, I am now just starting chapter 4. So behind! I feel like Satan is bombarding me with not getting this study done. Satan does not want me to be successful! I will not let him win. I will push through this and persevere! God will guide me through this storm.
Dear Father,
Thank you for guiding me through this storm helping me to conquer Satan and his evil plans! I know that you are so amazing and I see that you will pave the way with some minor bumps to getting closer to you. Please help me control my emotions so that I don't pounce on someone verbally ever again. Lord, help me seek my gift(s). I need help, Father, I have a messy room but I am a work of art...help me find the beauty and value you see in me. Help me help my quirky son to get the therapy he needs and to help me to find a doctor that will finally listen to me about Eli. Thank you for the blessings that are my children, both Kaelie and Eli!
In Jesus' Name I Pray. Amen.
P.S. I forgot to tell you...I have an appointment tomorrow (Thursday, 10/17/12) with Eli's pediatrician and it is the doctor that handles the behavioral and autism side of the practice. Please say a prayer that I can get him to listen to me and that I can get him to understand that Eli's problem is not just another behavior problem. At least Eli still has his IEP....
Fast forward to October of last year, I was able to get him an evaluation through our school district while awaiting various appointments through Children's Hospital. The teachers agreed that something was off with Eli but they would not tell me their honest opinion because they are not doctors. Their suggestion was to go through the speech evaluation first thing and then get back in touch with them. They even promised that they would be seeing Eli again soon. Another month goes by and we finally got the speech evaluation. His diagnosis was a speech and language delay; he tested at a 2 year old level (he was 3 years and 4 months at the time of testing). That alone got him his IEP and a spot for preschool. However, Eli did not start school until March, 2012. There was other paperwork and also an appointment with the DBPP or whatever that department is called at Children's.
January, 2012 we met with a nurse practitioner at Children's with Eli, my husband, and myself. She immediately dismissed the notion that he could be on the spectrum of Austim. Her exact words to me at the end of the appointment was "He does not have Autism because he communicates with me and he is communicating with you." I was enraged! I held it in and did not become unglued. I just smiled and said "While I appreciate your opinion, I do not agree with you and I would like to do some further testing. And actually, would like a cognitive test done."
February, March and April of 2012 is a great big blur to me when I think back to everything. Eli was still quirky and still the same. During that time we endured 2 parts of the cognitive testing. The parent session where it was pretty obvious to the doctor that my husband and I did not agree about Eli but we both agreed there were some problems. Then came the 2nd part, Eli's actual evaluation. Because this area hospital and this particular department is so overloaded with patients, I was not able to get the results until July! His test was done in April!!! So what happens next, I MISSED THE APPOINTMENT! Ugh!
I ended up rescheduling and had an appointment scheduled for August 28th. I go to the appointment that morning and I end up getting stuck in over an hour worth of traffic (didn't realize it was UC's first day back!) and I am calling the office from 8 am to 8:10 am; noboday answered! Their phones were not on until after 8:10 am. So I call and ask if I will still be seen. The customer service person that anwered the phone was not nice about it and gave a nonchalant, attitude filled response "Probably." So I say, "Okay, let's see if I can make it on time." So I call back at 8:20 am and got the same person. I asked her if I could still be seen, explaining through tears that I needed to have this appointment because of his IEP and I can't take anymore time off of work. She says "HOLD ON" with yet again, an attitude. I am crying now even harder and I say out loud to myself "YOU ARE SUCH A FAILURE! WHY CAN'T YOU GET ANYWHERE ON TIME? WHY ARE YOU SUCH A BAD MOM?" Finally, the CSP gets back on the phone, "The doctor will still see you if you get here before 8:30.", with the same attitude problem as before. I say to her, "Thank you so much for checking on that for me! And I will get there by 8:30." Yay! Something might just work out. I pull into the parking garage and it is 8:25. I run out of my car and dash to the elevators. I get up to the 3rd floor and run through the doors and go to the automated check in desk and fiddle with that and then it says "You must sign in with the receptionist if you are past your appointment time." I turn to the CSP and say "I'm finally here!" She gives me the look (you know, the I have the power kind of look) and she says, "I'm sorry but I don't think you can be seen. It's 8:29 but let me go check." I am devastated and start hyperventilating and the sobbing cries come back along with the CSP and she says"I am sorry but you can't be seen today." It was like the world came to a brief stop, like a water pot getting ready to boil over and then BOOM! I became unglued completely! I screamed at her, "It is 8:29 am and I am here before 8:30 am. This is the worst service that I have ever encountered. If this were at my office, the patient would be seen!" She says, "Hold on. Let me go get Dr. so and so's nurse." My face is red and I go out of the waiting room back into the hallway slamming the doors and punch the wall. At this point, I am sobbing, hyperventilating, and have snot, lots of snot running down and out of my nose! (Not one of my finer moments in life!) The nurse comes out and I completely explode on her, pouncing on her like my cat does with her catnip toys. (not physically but verbally) She really was professional and kept her cool so well. My temper tantrum did not work and I think at that point someone may have called security. I left.
The humor in all of this... I was about to start "Unglued" with my Lifegroup at church the very next day and the OBS through Proverbs 31 in the next week or 2. (I really could of used this study that day!)
A few weeks later, I sucked up my pride and went back for another appointment this time with my BFF for moral support on September 17, 2012. I even apologized to that poor nurse that I had pounced on! We are in the appointment and we are going over the test results, mostly average or above average. Now, this doctor that I am going over the results with has NEVER, I repeat, NEVER, had a face to face appointment with my son. She finishes with, "At this time, my colleagues and I feel that your son has no Autism." I should have been happy with that. Oh No! I looked at her and smiled sweetly, "Well, I don't agree with you and your colleagues. That is why we are seeking a second opinion." Her diagnosis was disruptive behavior disorder. My son does not have disruptive behavior disorder. Sorry but he does not. I am not in denial. My gut feeling is telling me to push forward with a second opinion.
My point being in all of this....I WILL NOT GIVE UP! When it comes to my kids, I will be their voice and their advocate until the day I take my last breath. I will fight for them.
More importantly, how have I changed since beginning the "Unglued" study and to now after all of the above?
I have learned that I AM A WORK OF ART WITH A MESSY ROOM AND YES SOMETIMES AN EXPLOSIVE REACTION WHO SHAMES HER SELF!
I am striving every day to make imperfect progress. I am learning that I can control my emotions. I know that I trust God. The day I blew up, it wasn't all about me and I took on the perspective of the CSP and that nurse. I wonder how many times they were yelled at that day or the day before. They were only following company policy even if I don't agree with their policy.
I have replayed that day over and over again, I have brought that day to God and I have left all this worry over Eli to God. In the end are all these battles really about me? No, it isn't.
2 Chronicles 20:15b NIV84
This is what the Lord says to you: ‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s.
Chapters 7 and 8: I am not even that far in this study! However, I am looking forward to finding out about the "Biblical Procedure Manual" and thumbing through to chapter 8: "When discouragement looms close, God's power moves in closer." gives me so much hope!
Personally, I am now just starting chapter 4. So behind! I feel like Satan is bombarding me with not getting this study done. Satan does not want me to be successful! I will not let him win. I will push through this and persevere! God will guide me through this storm.
Dear Father,
Thank you for guiding me through this storm helping me to conquer Satan and his evil plans! I know that you are so amazing and I see that you will pave the way with some minor bumps to getting closer to you. Please help me control my emotions so that I don't pounce on someone verbally ever again. Lord, help me seek my gift(s). I need help, Father, I have a messy room but I am a work of art...help me find the beauty and value you see in me. Help me help my quirky son to get the therapy he needs and to help me to find a doctor that will finally listen to me about Eli. Thank you for the blessings that are my children, both Kaelie and Eli!
In Jesus' Name I Pray. Amen.
P.S. I forgot to tell you...I have an appointment tomorrow (Thursday, 10/17/12) with Eli's pediatrician and it is the doctor that handles the behavioral and autism side of the practice. Please say a prayer that I can get him to listen to me and that I can get him to understand that Eli's problem is not just another behavior problem. At least Eli still has his IEP....
***Update***
ReplyDeleteJust got back from the appointment and we are moving forward to a diagnosis of PDD as well as other things...the doctor's exact words to me, "Jen, calm down. You are 100% right and I am so glad to see a parent fighting for their child. I agree with you that there is something more going on with Eli. It's not just one problem but he has blended problems but we are going to get to the bottom of all this and your son is going to get the help that he needs."
God Bless you, Dr. Weatherington! Thank You Jesus!!!!
Oh, my. Bless your heart. I couldn't even imagine what that must be like. I am praying that you are able to work on your procedure manual. It is such a blessing to know God is in control and He loves your son so much and has a plan for both of your lives.
ReplyDeleteJennifer N, OBS group leader
Thank you Jennifer! Your prayers and encouragement are so appreciated!
DeleteOh girl I hear you. My son is diagnosed with aspergers and getting services through our school system has been crazy. They don't agree with his diagnosis. I'm praying for your family! Keep fighting!!! Hugs!!!
ReplyDeleteSuch a frustrating time with all of this for sure! The great thing in all of this mess, is that at the end of the day...God still loves me and my family!
DeleteI thank God every day for his teachers, fortunately his teachers agree with me! It's just the doctors are hem-hawing around about his diagnosis. I am at the point really that a diagnosis is not as important as Eli getting the therapy he needs.
From one Mommy of a perfectly, imperfect special kid to another....(((Hugs)))
I want you to know that I for one am proud of you, for fighting to make sure that your kid gets help. I know that you need help with the unglued moments, and this book will help. But in spite of our imperfect progress we will get there.
ReplyDeleteDeanna,
DeleteThank You! It's nice to know that I am doing something right because some days I feel like I am doing it all wrong!
Dear Precious Ones,
ReplyDeleteI wrote your name down, and I want you to know that your needs are on my mind. Jesus can cure Eli and you. Keep saying over yourselves, "By His stripes, I was healed." (1 Peter 2:24) Jesus had me quote this recently when I had cancer surgery. He impressed upon me that I WAS healed and to think of myself as this. I am now believing they removed all the cancer. I try not to allow thoughts that some might be left behind. satan wants me to think that. Just remember that healing is finished. Jesus destroyed all the works of the devil. (1 John 3:8c, John 17:4, John 19:30). Holy Spirit gave me this sequence of scripture when I was first diagnosed.
My little neighbor friend is healing from autism. I'm believing this for him--and I'm believing it for Eli. God bless you, Precious one.
Lucy,
DeleteThank you for praying for us! It means so much to know that there are still nice people in the world that do care.