Thursday, February 5, 2009

More on the history of Eli...

So I left off on the history post at the point where we had taken Eli out of Pre-School. I HATED that...He loved going, and he just loved learning. The problem was not that he couldn't learn, it was just that he couldn't learn in that environment. And we didn't know at that time how to make it work for both him and the teacher.

It was his last day in class, when I was talking to his teacher and thanking her for all of her help. She took me aside and confided in me that she believed that there was a legitimate issue. Perhaps even more than ADHD, and she strongly recommended that I see a doctor. It was at that point that I got the most valuable piece of information. She told me that the pediatrician is the last place I could go for help. That has proven true so many times, and if you can come away with ANYTHING from this blog, let it be that if you have an issue with your child, skip the pediatricians office and head straight for a child psychiatrist/psychologist. Some pediatricians are great to give referrals for good child psychiatrists, but all I would ask them is for their advice on a specialist. Don't waste your time with discussing your heartaches with your pediatricians. This is what I guarantee you will hear...

*It's just a phase and nothing to worry about
*You're worrying because he's your child...don't worry, it's a normal part of development
*All kids do this, behave this way, have these quirks at some point or another.
*You're getting worked up over nothing...he's normal

Those are the WORST things you can here when as a mother, in your gut, you KNOW something is not quite right.

So I took her advice. It wasn't easy finding a place to take him. First I had to contact our insurance and get a list of approved providers. I started calling all of the numbers on the list. First one - number disconnected, second one - wrong number, third one - they no longer take our was so freaking frustrating. I called the next to the last one and finally felt like we hit the jackpot...they took our insurance, AND would be willing to meet with us. CHA-CHING! Yea!!! So we made the appointment with this place called Advanced Theraputic Services.

This place turned out to be such a blessing. We found a wonderful behavioral therapist, and we worked with him weekly. We saw a psychiatrist who felt that Eli would benefit from (gasp and sigh) medication. I had always been against medication, fully believing that parents who medicated their children were simply ignoring their parental duty of spending time with their child and not putting up with the crazy amount of energy that children possess. But we were past that normal point of an energetic child. We were dealing with a child who had to leave a preschool program for lack of ability to fit in and follow the rules. We were dealing with a child whose tantrums were worthy of an Oscar, and often he had them for no reason or for dumb reasons. He also at this point was starting to show signs of anxiety. He was worrying over things, and we had no idea why. He was afraid Chase was going to get lost, or get into his things, even. And it was the summer when he was 4 that we really started to see his anxiety about getting his hair/head/face wet. He LOVES long as he can touch the bottom of the pool and as long as you don't ask him to put his head under the water. But asking him to dunk his head, or even put his face in the water to blow bubbles is like pulling teeth. He is so afraid of that. To this day he has anxiety with that, and washing his hair is a struggle most nights. Sometimes he is brave and does it without a fight, but mostly hair washing results in tears and frustration for him. But back to the swimming...It was a parent/child swim class, so he was fine as long as he could cling to me. He didn't trust the floatees around his waist to hold him up, so getting him to dog paddle on his own was virtually impossible.

At this point life was touch and go. We had weekly therapy appointments with this wonderful guy...Ray, who really "got" Eli. I was reassured by him and felt that often times Eli's therapy was more beneficial to me than to Eli. Every 2 weeks we met with the psychiatrist, trying to find something that would calm Eli down so that we could do "normal" activities like grocery shopping, mall shopping, and play at the playlands and things of that nature.

I need to say here that going places like playlands at the mall were nearly impossible and always asking for trouble. Eli had no concept of waiting in line. He would walk right to the front and push his way onto a slide. If someone was in his way he would push them out of it. Not out of meanness, I fully believe. I believed that then and I believe it now. He simply felt that he had the right to go down a slide and that he shouldn't have to wait. He didn't understand that children have feelings of their own and that they have rights too. There were a few times when he did wait, and those FEW instances had me holding my breath and thanking God that he was doing what he was supposed to.

This past summer of 2008 marked a huge turning point for all of us. Not only was Eli's behavior no longer tolerable, he was flat uncontrollable. He had gotten so sensitive to touch. Sometimes just barely walking past him and brushing against him made him angry. Sounds that are normal to all of us - the sound of traffic as you cross a street, the sound of the train coming in the metro, even mall music, sometimes just hurt his ears or bothered him greatly. He often walked around with his hands over his ears because things bothered him so much. He had always been really possessive, but he became very paranoid. His bedroom door HAD to remain closed. If I opened it before going to get a load of laundry to put away in his room, by the time I made it back down the hall with the laundry, he had closed the door. He had to have so much water in the tub for his bath. He had an obsession with wearing shoes indoors. It took forever to get him transitioned to wearing houseshoes, but when he found houseshoes, he wanted to wear them outside as well. Any thing that he took to, he took to it. Latched on and hung on for dear life, as though someone would rip it away from him.

He always complained of being hungry, but didn't eat. We found out that he was afraid we were going to run out of food. Now, let me say emphatically that we eat at every meal, and there was no rational reason for him to fear us running out of food. He also became MORE than picky at this point, and he will only eat about 4-6 different foods.

If he wanted to go out and we didn't have plans to, he threw a tantrum. He screamed. He screamed like nobody I've ever known, and wouldn't stop. If we were out somewhere and I asked him to behave or settle down, instead of cooperating, he would scream back louder than before and keep getting louder. We learned that sometimes grocery shopping got cut short...sometimes we had to leave a restaurant before our food came...sometimes we left playdates and had time-outs in the middle of stores. I learned to expect the stares...the looks of disapproval from older (usually) women, who I'm sure felt that he would behave so much better if only I had as good parenting skills as they had. A few times some of the looks were so pointed, and even muttered comments commenting on my out of control child, and I had enough and exploded back at them with something like, "haven't you ever seen a child throw a tantrum? Get over yourself and stop staring". That normally stopped the stares, comments, and even Eli's tantrums. Watching mommy holler at strangers was usually a good enough distraction to divert Eli's attention elsewhere. What a great example that was huh? I have definitely found my breaking point.

Something else that we battle is Eli's need to take things with him EVERYWHERE. He will be holding onto 5 little cars and trying with all his might to hang onto them, and many of the tantrums we've had have been because he refuses to put down his toys to open a door, or go potty, or turn on the tv, or whatever it is he wants to do, simply because he is afraid someone will steal his toys from him as soon as he sets them down. When we talk him through HAVING to put them down, he contorts his body...putting his feet and legs over the toys as if to hide them just so they will be safe. I can't count the times he has dropped cars out of his pockets crossing the street...He literally has to take all these things with him whenever we go somewhere...and it is usually so much stuff that he cannot possibly handle it all. That is so frustrating. He will kick and scream and yell and cry to get someone to help him with something, rather than just put down his toy and do whatever it is he needs to do.

We also went through this period of about 5 months where he was up, awake and ready to go by 6am. We're talking shirt on, pants on, socks, shoes, and often times a jacket even. He could NOT spend time in his pj's or sleep in or be lazy. He was very set on the fact that things had to be a certain way. The tracks had to be set right on his train table. If anyone changed them, it drove him nuts. He is a very specific child and demands that things be a certain way...if they aren't he has a very hard time functioning.

It is really at this time...this past 6 months specifically, that I have become so exhausted. So worn down. So frustrated and at the end of my rope. He had been on medication combinations for quite some time by this point, but NOTHING worked. Nothing seemed to help him be "normal" and calm, and to this day that is the one thing we are working on.

This is where I will stop for tonight, but tomorrow I will finish up and dig into the specifics that we've been battling over the last few months. Including his hospitalization in DC and specific fears, obsessions, and irrational thoughts.


Liana said...

Stacey, thank you for being willing to share your story. I am sitting here reading this and my heart aches for you and Eli and the rest of your family and close friends. I can not imagine going through what you have and will be in the future. Again, you are in my prayers daily. Keep up the good work.

Stacey said...

Thank you so much Liana...I appreciate your have been so kind and encouraging...((HUGS))

Nikki said...

Stacey, thank you for sharing Eli's story and your story. I knew things had been difficult, but I had no idea how difficult they had been on you. You are an amazingly strong woman and if anyone can get through this and help her family through this - you are the one to do it. You've already conquered so much and your journey with Eli is just beginning. (((HHHUUUGGSSS))

Stacey said...

Thank you are so sweet... You've go so much on your own plate and to be so thoughtful of are just so sweet. HUGS

samskat said...

My heart aches for you, and I am so proud to be related (even if its just by marriage) to such a strong woman. I can't imagine going through all this. We love you guys and we're praying for you. Let us know if you need ANYTHING, and please keep us updated.

Stacey said...

Thank you so much Kat...I truly appreciate your loving words. ((HUGS))

Wendy said...

Wow Stacey! You are amazing! I just have no idea where you get all your strength from. Despite feeling bad for you, I had to laugh at you yelling at strangers and the fact that got Eli to quit his tantrum. You know, if there are never any strangers around and you need to vent, you got my number. *hug*

Stacey said...

Thank you Wendy!!! I might have to take you up on that!!!

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