Our journey thus far

**I am going to apologize for the length of this post, but I want to give as much information as I can so that other parents going through this now or in the future will have my experience to compare to their own.**


As stated in the background post, this is not a new development. We've been dealing with everything since Jake was fairly young. I think we discussed medication with the doctor the first time when he was about 3. He had been going to speech therapy for a while and the therapist recommended that we try occupational therapy. (By the way, if your child is like Jake and you can get some Occupational Therapy going, DO IT. Their tactics seem insane but help.) After doing OT  for a while his therapist asked if we had ever thought about medication because he wasn't getting as much out of his sessions as he could if he were able to focus even a little.


 I was anti-medication for someone so young. I still have moments where I feel guilty. But then I think of how 'dysfunctional' his daily life was without it. The doctor we saw at that  point laid a lot of blame on me. He advised us that we should make a wooden paddle, wide and flat with a handle. When he acted up we were to spank him on the bottom with it and if he wasn't crying when done then we didn't do it hard enough and needed to do it again. Then hang it on the wall where he could see it and it would be a constant reminder to act appropriately. I cried, A lot and told him I wouldn't. He said he wouldn't get better because he already knew at 3 that I was a push-over. I asked him what was I to do when he told someone we beat him with a paddle and they called child protective services on us. He said, "Give them my phone number." We stopped seeing him shortly afterward. He was on Intuniv 2 mg and Divalproex 125 mg twice daily for mood swings. The doctor had him diagnosed as ADHD and ODD (Oppositional Defiant Disorder) and SPD (Sensory Processing Disorder). This last one is the trickiest of all, if you ask me. I'm not an expert, I wish I were. 


Well, I am a worrier. I'll thank my Momma for that. So I did what I should never do, I googled it. I googled his medicine and possible side effects. Turns out the one for mood swings could actually cause mood swings, how counter-productive, I thought. Plus, I had this horrible feeling that he shouldn't be on medicine so young. The doctor gave us a speech of how the one medicine could build in his system and cause liver damage so it was really important to watch his levels. One blood test was done, (Which took an hour, mind you. Screaming, holding down, threats of vomit, 3 different people trying. BAD DAY.) and then never again. So when we started moving away from that doctor, we also started moving away from the medicine. We had to try and see if his actions were just an age thing and maybe he would be better. 


He went for his preschool screening. Funny, funny day. You cannot speak down to Jake. Do not speak to him like you would a 'normal' young child. He feels belittled and will shut you out completely. So when we walked into that building and the woman got down on his level and in her most sugary-sweet voice said, "Do you wanna come play with me??" Mistake. Big one. Bad lady. He put his little hands on his little hips, cocked his head, looked at her, looked at me, then back at her and with this annoyed voice said, "Sure." I wait in the room while they do all their testing, I hear no random screaming, so I decide it must be going well. They come out and ask me to follow them to discuss his results. We go to a room with another parent/child/teacher and he played while we talked. Out of a possible 100 he scored 41. The reason? According to the woman, "He just wouldn't answer hardly anything for us. He wouldn't try to say his alphabet, he wouldn't try to count." Really? Your lady pissed him off. Excuse my language. Oh well, it was a low enough score that he didn't have to go on a waiting list for a spot in pre-k this year. Our school is small enough that there aren't spaces for all kids in pre-k. They take the lowest and start there, with a few slots for mentor students that score high and behave well. We walk out of the building, him holding my hand, glad to be leaving. He looks up at me before we get to the car and says, "Momma, those women were so stupid." I know, he was 4, he shouldn't talk about adults like that. But in his mind, when she decided to speak to him like a baby, she was stupid. So he wasn't going to do anything she wanted and he didn't! 


While the woman and I discussed him, he got into a few arguments with the other little boy. She asks me, as politely as possible if we have thought about taking him to the Thompson Center for Autism and Neurodevelopmental disorders in Columbia, MO. I say, "No, but I will call them if you suggest it."  A day or 2 later I have papers being sent in the mail to fill out to start the process of scheduling an autism screening. I'm not talking a little paperwork...26 pages, front and back. If you are facing this situation yourself, I advise you to get an ink pen that has a cushion on it because you will be filling out more paperwork than ever before in your lifetime. Then they put us on the waiting list and we wait, for months. Closer to time, they send more paperwork. The same questions. I guess they just want to make sure you are telling the truth. Even closer, phone interview. Same questions. DUMB questions. "Is there anyway your child could be pregnant? Does he leave school often? Does he use any illegal drugs?"....HE IS A 5 YEAR OLD BOY! NO! 

October 17, 2011--The big day. 2 hour trip. 6 hours of testing. Not medical, all behavioral. Diagnosis...Severe Combined type ADHD. He is overly impulsive, inattentive and hyperactive. He will be worse as a teenager. (This scares me still.) He is placed on Guanfacine 1 mg twice daily. It helps for a while, we are hopeful. Our insurance does not cover like we were informed it would, we now owe them $1900 and cannot afford to return to see their pediatricians. So we started looking for a new one. Took forever, but we finally found her. 


 About 1 month ago, he started having problems. He became violent, easily angered, malicious, downright frightening sometimes. He would say things that no 5 year old should know to say. He threatened to burn our house down with myself and his little brother in it. He would hit, throw things, scream,..not words, just AHHHHHHH until he ran out of breath. He'd cry, for no reason, just cry. Something was wrong. This was not my baby. I wanted him back, I felt like I had lost him. I cried, so so much. I was slipping into a depression, all I felt like doing was crying or sleeping. I didn't care if my house was clean as long as my kids had clothes that were clean to wear, I didn't care if the laundry was done. I felt useless, like I was drowning. He was drowning and was in essence, taking me with him. It wasn't his fault. I know it wasn't. But I started to resent him. This is the part that is hard to talk about. I feel so utterly guilty. My mom asked me one day, "Well, you wouldn't give him back would you?" I actually said to her, "They won't let you." I didn't say No. I was without hope. Things would never be normal, this was my life. Non-stop fights, violence, threats of harm. He never wanted any sort of affection anymore. Nothing seemed to make him happy. He was hurting the animals and his little brother regularly. And I couldn't fix him. His actions were causing fights between my husband and I because we didn't know what to do with him so we either did nothing or the wrong things. I googled possible side effects and found that in rare cases the medicine he was on has caused these types of moods/actions. I stopped his medicine, immediately. Within 2-3 days he was so hyper he was just insane. Non-stop insanity. But...he wasn't violent. He wasn't always angry. Just a little wacky. This is when the no-sleep started. No medicine=no sleep. 


The day came that we finally got to visit the new pediatrician. I absolutely loved her. We spent over an hour in her office talking to her about everything. Any question we had, she answered before we could voice it. She let him be crazy in her office without being rude to him because she understood he couldn't help it. At the Thompson Center they just shrugged off the idea of Sensory Processing Disorder. She said that he has Severe ADHD and A LOT of sensory issues. All of the things he does that scared me because they are traits of children with autism..they are all because his body is seeking some sort of sensory input that it isn't getting. If you don't know much about SPD, it doesn't make sense, but I will explain it at a later date. In essence, his brain is wired differently. Most people like to be hugged, it gives them a feeling of calm and security. It hurts children like Jake. But he likes Firm, constant, constrictive pressure. He doesn't know he likes it, but his body does. He fights it because it calms him. She acknowledged it when so many don't. She prescribed Intuniv again. The medicine he was on is a variation of the generic of Intuniv, but is not the same. Very few side effects and it is time-release. Also, she said if we can figure out how to get insurance to pay, she will put him back in Occupational Therapy. I pray we can. 


He has now been on the medicine for 3 days and I swear there is a difference already. He isn't calm but he is calmer. He fights sleep still but eventually gives in and rests. I am, once again, hopeful. I see a light at the end of the tunnel that wasn't there a week ago. She recommended a book called 1-2-3 Magic which I have read and we are now trying to implement. I can breathe again. Not normally yet, but a little better. 


Please, if you have anything you want to ask me, I will try to answer. tracey-sloan@hotmail.com