2013 – The last half of Pre-k and 1st grade

January 2103 brought continued behavior challenges at school.  Home continued to improve.  That was a departure from the same time the previous year. We were 11 months into 5-6 day a week therapy.  Mickey was becoming more and more aware of his feelings and identifying them.  He could tell you nine times out of ten what he should have done differently, after a bad choice was made. That was huge.  Twelve months before, he couldn’t do that one time out of ten.  The therapy was working.  Daycare was better too. But, the school setting was becoming an issue.  We called an emergency IEP meeting to discuss a plan.

This would be the toughest IEP meeting I have had to date.  One note here, our school is amazing.  For the most part, our county is too.  Our average IEP meeting for Mickey has been about 4 hours.  They are very collaborative, his therapists have been invited to attend as well as his CSI.  When we were having an issue in PE, we figured out that it was because he didn’t like to try new things in front of other people.  We remedied this by having the PE teacher email the weekly plan so that we could preview the activity at home (jumping rope, dribbling a basketball, etc).  When he was chewing his shirt, chewelry was suggested.  When he started eloping from the classroom we found him a spot he was allowed to go in the room away from everyone.  These meetings were stressful, but always a team effort.  This one was different, it was our third of the year and we all knew the end was in sight for him at this school.

We tried. The school tried, but they weren’t equipped to deal with Mickey.  His safety and the safety of others was becoming harder to manage.  Other schools in the county were and we made the decision to make the move.  Not a person in the room (and there were 9 of us) had a dry eye.  Tears were shed, the principal and head of special ed were heartbroken.  Nobody would be more heartbroken than Mickey himself, but I was a very close second.  He was to move to a self contained classroom at another school about 15 minutes away.

He started this school mid January.  The teacher there was great.  The administration, nurse and staff in the office were not.  Coming from our warm and fuzzy little school to this place was a rude awakening of the difference in schools from one to another within the same county.  The student body was the same size, but the building was newer, larger and colder in feel.  Mickey’s class was removed from the other students, though he would be in general education for music, art, PE and technology, as behavior permitted.

There were challenges with this program, but the advantages were obvious too.  First of all, he seemed less on edge.  The smaller setting was perfect for him – less distractions, less sensory issues, Second, his grades improved.  From nearly zero progress educationally – he still had less than 30 sight words and was still working on the 3rd month of the kindergarten reading program, he started to catch up.  We hung sight words all over the house, we focused on 5 a week, but they started to take less than 3 days for him to get them.  At school, without the behavior challenges impeding the the learning process, things started to click.  By the end of first grade he would be reading at grade level, so he completed the entire kindergarten and first grade reading program in 5 months.  I was ecstatic. His teachers kept saying how bright he was and that he had a real aptitude for math.  His class housed 5 kids total and he was the only 1st grader, there was one kindergartner and three 2nd graders.  He was doing their math with them.

His handwriting was abysmal and there were questions as to whether his reading comprehension was good, but he was reading, he was writing, and he was participating.  There were behavior issues, for sure. But, this setting proved to be less stimulating for him and they were less frequent and certainly no where near as volatile as they had been. I began to have hope.  True hope for his future. He wasn’t the child with a low IQ that wasn’t ever going to be able to learn.  As we got behavior under control we began to see his potential.  We continued with our therapy.

One other thing that both Minnie and Mickey worked on was a relationship with each other.  They told Matt, our family therapist that we saw once a week, that they wanted to improve their relationship (or as they phrased it – learn to play together).  Truthfully, Mickey needed to learn to play with anyone. One common note from his teachers is that he would play in parallel, but never really with another child.  I saw this at daycare and the rare birthday party or event with other kids.  He would play somewhat with children much older or much younger but never with peers.

I had chosen to adopt siblings because I had hoped it would make the adjustment period easier because they had each other.  My children didn’t have a relationship – they were two kids who lived in the same house, but only on the rarest of occasions did they voluntarily interact.  Part of the issue was that Mickey wasn’t capable of it, part was that Mickey always clung to the nearest adult.  Even over a year after placement, he couldn’t stand to be out of my eye line.  He would pee without an audience but he talked to you the whole time and never closed the door (that was progress).  His separation anxiety was still significant.  He also loved almost every adult that came into his life, so when he was away from me (school, my parent’s, daycare, with Uncle, etc) he transferred that clingy behavior to them. He preferred to be touching.  He had no personal space boundaries and would sit next to you and rub your arm, or his teachers arm, etc.  He was a sensory seeker that constantly needed input.

We discovered that weighted blankets and the weighted teddy bear at school were valuable resources.  He loved the pea pod which squeezed him. He chewed his fingers, constantly complained of being hungry because it was a comfort to him (crunchy or chewy were soothing), etc.  He also started to show perseverations.  At the new school during a break he was introduced to Word Girl.  If you aren’t familiar, she is a superhero that teaches vocabulary.  What could be wrong with that?  Well, he became convinced that if I would buy him magic shampoo, he could become her.  He talked about her every waking minute.  He wouldn’t watch anything else, he became upset when classmates would ask for a different video during breaks.  This escalated for months.  Finally, classmates refused to play with him or talk to him because they didn’t want to play Word Girl or talk about her.  I asked him why he couldn’t stop and he said “my brain won’t stop thinking about her, no matter how hard I try”. We had to cut all Word Girl from his life – at school, daycare and work we banned it.  It took two months for the talk to stop but it eventually did.

Every therapist and teacher that worked with Mickey were shocked that there wasn’t an Autism Spectrum Diagnosis.  Now that the seemingly unexplained tantrums had come to an end, it was more than obvious that they weren’t unexplained.  They came when routine was broken, when he was over stimulated, or frustrated.  They weren’t random.  Bipolar became less of a concern and a spectrum diagnosis was assumed by all who dealt with him.  In many ways it was classic autism – anxiety, compulsive, lack of ability to regulate, some ocd tendencies, lack of self awareness, lack of social skills, lack of eye contact and maybe most telling a complete lack understanding of social cues, vocal tone and facial expressions.

It was becoming more and more obvious that we were dealing with Aspergers at the minimum. We couldn’t get another psychological eval until December, so we just moved ahead with an assumption of diagnosis. The school year wrapped without another incident that required him to be restrained.

We even moved to a bigger house in February.  The move went off without a hitch and other than some insecurities that the kids’ displayed about what happens to your stuff when you move (both kids associated moving with leaving things behind because that was their only experience.  They came to me with a paper box of their belongings, a couple of favorite toys and a few articles of clothing). They didn’t understand until we got to our new home.

We also discovered that routine, while important, had to be changed on the weekends.  We got in the habit of going to the grocery store at 6am on Saturday, because it was easiest on Mickey.  But, we didn’t go one weekend and it bothered him for a week and we saw behavior regression. So, we learned that weekday routines needed to be as regular as possible and sleep and wake up times needed to be consistent on the weekends, but we worked hard to vary weekend routines and get him used to those changes.

The kids started to beg to go to Disney.  They were watching their friends go.  They had been asking since I brought them home.  We weren’t ready, but I started to think it might be a possibility.  A year ago, I would have said you were crazy. I started to have hope that it might be possible, someday.  I started to think that some degree of “normal” might be possible.

Around the time of our first adoption day celebration in May – a nice dinner after Minnie’s ballet recital with my parents and brother at the same restaurant we celebrated at a year prior, we were all settling in. School was going well, and he was scheduled to stay there for the next year.  Minnie was wrapping up pre-k and doing awesome.  The therapists were cutting us to four days a week – 1 day with the family therapist, one with Mickey’s individual therapist, and two days with the CSI.  This was down from 6 days a week.

Fall and holidays 2012

Fall was a mixed bag – September was decent, October bad, the first part of November was good.  With all things Mickey, it was up and down.  We had some fun, there were moments of normalcy. Leaves, pumpkin patches, Halloween – unfortunately, Mickey did not get to participate that year, as he got in quite a bit of trouble that week.  So he joined Minnie and I without a costume on our trick or treating.

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Thanksgiving was fine, but after the break we began our annual holiday behaviors.  Lack of routine and normal schedule was a disaster for Mickey.  The issues at school were increasing and he was spending more and more of his day outside of the general education setting and in the smaller special education class.  He had to miss out on the holiday party because of behavior.  We discovered that when I volunteered in his class or visited him for lunch, his behavior would be awful in the afternoon, so I had to withdraw from both.

This would continue through January.  Oddly though, behavior at home was continuing to improve.  Minnie danced her first Nutcracker and Mickey sat through the performance, enthralled. after 4 months of rehearsals, I think he was excited to see the finished product. We had a lovely Christmas and on New Years, Minnie went to her first sleepover with her best friend.  Mickey and I drank sparkling grape juice and toasted the new year. I was looking forward to a better 2013.  2013 would mark milestones and things that I never thought possible for Mickey.  There would also be numerous challenges.

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Back to school 2012

We had left the cocoon of kindergarten with an incredible teacher and parapro.  Minnie also had to head to Pre-k and leave Miss Nikki.  This was emotional for us, even though we lived 2 doors down, Nikki had become a very important person in all of our lives and Minnie was going to a public Pre-K with 25 kids in a class, after a year of being one of 5. I have long loved teachers and had many important ones in my life, but with Mickey, I had no idea that his success could be almost entirely based on a teacher.

We loved Mrs. R., his new first grade teacher.  The rest of his team carried over from kindergarten – speech, OT, Special Ed and the behavior parapro he shared with several other special needs students (she could be called to come get him at any time he was struggling and take him for a sensory break or just a walk). Mrs. R. was sweet, energetic and young.  She had talked to his previous teacher, read his IEP and I thought she was ready. First grade is far more structured than kindergarten.  The class parapro was only in the room part time. In a class of 22, Mickey had a hard time from day one.

In the meantime, Minnie was really having a hard time getting excited for pre-k.  She didn’t want to leave Ms. Nikki, she was scared.  This was new for us, because in almost all ways she is relatively fearless – she loves people, makes friends wherever she went and was very outgoing.  The first day she cried, hysterical crying that could be heard all the way down the hall.  I struggled – that was very unusual for her.

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Mickey started the same day and his first day would be among his best.  His teacher had been concerned, but she sent me a glowing email about his day.  I was surprised and pleased.  As the summer had progressed, so did his behavior.  Meltdowns were far less frequent and of shorter duration when they did happen.  They were still as intense as ever, but they lasted an hour or less generally.  But, there were still a lot of them that seemed to come from nowhere – triggers weren’t always easily identified.

That would be one of the best days of the school year.  Behavior at school declined from that day forward.  His teacher called, the principal called and we had meetings with his therapists trying to deal with each behavior as it reared its head.  There were a lot of phone calls.  He had to be removed from the classroom nearly every day – he was a distraction to his classmates.  If the teacher helped another student he would act out until they sent him to the special ed class.  The issue with that was that the special ed teacher was only there until noon.  After that he was either in a room with the special needs parapro or he had to go back to the general education class.  He hated being in the class, even though he loved the teacher and several of his classmates.  It was partly sensory (which we didn’t know then – remember we still thought we were dealing with bipolar, not so much Autism, though he had a PDD NOS diagnosis.

Mickey can also be a master manipulator.  He figured out early that if he acted out in Mrs. R.’s class, he could leave.  Mickey would prefer one on one adult time to almost anything else, and he knew he would get that time.  They would warn him that if he couldn’t get it together, he couldn’t go back to the general education class – this was fine by Mickey.  The school was unintentionally fueling the behaviors.  We had started to see this at home too.  If I tried to sooth him or paid him attention during his meltdowns, they would never end.  If I offered an incentive that he wasn’t that interested in (say jumpy bounce house place, where the noise bothered him or pumpkin patch, which he didn’t have any idea what it was), he would act out so that he didn’t have to go.

What we had found successful was to walk away.  If he threw himself down on the floor or started coming after one of us at home, we took him to his room and closed the door.  At his therapists suggestion, I had turned the door knob around to be able to lock the door from the hallway.  This was not to be used long term, just until he calmed down – plus he figured out how to pick the lock with a penny, so it wasn’t terribly useful, but he would have to calm down enough to do it.  It was just a means to get him to get under control.  The first time we did it, he kicked the door so hard that it went through the door frame and I had to crowbar him out.  But, after that, we started to see success.  He would yell and scream and kick, but when he wasn’t getting his payout it would stop.  He would get under control, knock on the door and speak appropriately.  Then we would talk about what had happened.  If he lost it while that conversation was happening, I would walk out again.  Mickey didn’t like to talk about negatives, so that happened several times as well.

But, we were getting somewhere.  Now, how do you translate that same response in a school setting?  Obviously they can’t leave him unattended in a room, nor would I want them to.  His room was as safe as possible, but that option didn’t exist in a school setting.  They agreed that they were feeding the problem and we worked to find a solution.  They did, they had a storage room that wasn’t used much and they cleared it out.  They weren’t permitted to close the door without a teacher in the room, but she agreed not to speak to him or acknowledge him.  Until he calmed, she would sit with her back to him.  This worked.  We started to see less rages, because he wasn’t getting his payout. But, that wouldn’t last.

At this point, I want to say that none of this is what I thought parenting would be like.  Locking your kid in a room? What kind of monster does that?  It is important to know that he was safe, he was never locked in overnight or for any length of time once he was calm.  This was only to slow down the tantrum and keep my daughter safe, as before we figured this out, she was locking herself away from him and he had a whole house to destroy.  His room was contained and anything breakable or dangerous had been removed.  Also, we haven’t had to do that since Feb of 2013, so in 4-5 months he figured out that those behaviors weren’t getting him what he wanted and that entire process became unnecessary.  I do realize that this blog opens myself up to criticism, and I am ok with that.  I never had any desire to parent a kid that needed to be locked in a room, yet I got a kid that I love more than life itself that had to be kept safe and learn how to behave appropriately and deal with his anger in a constructive way.  In conjunction with 6 day a week therapy, this was one of many many tools we used.

Summer 2012

Progress.  School was out.  Daycare was not a great environment for Mickey because it was too many kids in one room and from a sensory perspective it was tough, but we didn’t have nearly as many issues as I feared. Meltdowns at home were less and less.  Other than one notably embarrassing meltdown in a Target we were mostly able to go places and do things.  He was less unpredictable.  I started to see warning signs and even though they weren’t logical to me, I was able to remove him from situations or get him to use coping skills before the meltdown happened.  Therapy continued.  We ran through 2 CSI’s, one who left because she was pregnant and on a bad day Mickey through a pencil at her.  It scared her and me.  The next was a large man, former military.  He had mickey do pushups and physical activity during the sessions.  It distracted him enough that Mickey would talk.

Mickey was starting to be able to voice fears and emotions.  He still mainly used colors, but he was starting to identify when he was happy or sad or angry or scared.  That was huge.  Our vacation was coming up in July. Then we got a phone call that changed our plan.  Two weeks before our trip, my grandfather had a stroke.  We were called home to Indiana because he wasn’t expected to make it through the night.  I packed and picked the kids up and we left immediately.  I was emotional and Mickey, for all his issues identifying facial expressions and nuances, knew something was wrong.  I needed to set the groundwork in case my grandfather didn’t make it.  Mickey and Minnie had not met their Great-Grandfather yet, so when Mickey asked “is he going to die?”, I didn’t shy away from the question.  I told him it was possible.  He cried.  Minnie cried.  I cried.  I adored my Grandfather and desperately wanted him to meet his newest great grandchildren and via our phone calls, I knew he wanted to meet them too.

My dad drove up with us, in the car ahead.  I hadn’t ever attempted a road trip with the kids and my dad was heading up anyway, so we followed each other and drove late in the night.  This turned out to be a good thing because an accident extended our 6.5 hour trip to nearly 10.  The kids slept most of it, and my dad was able to sit with them for restroom and coffee breaks, so that I didn’t have to wake them.

We arrived at my cousin’s house at 6am.  I dropped our stuff and my cousin offered to watch the kids so I could be with my Grandfather.  We had no way of knowing how he was in the overnight hours and we agreed that it may not be the best introduction for the kids.  So, I went.  My grandfather was not only still alive, but overnight had improved.  He was awake and alert.  He asked me to bring the kids and I did.  Minnie charmed him with a solid hour of her ballet moves.  Mickey loved him instantly.

We then went to the nursing home to visit my Grandmother.  Her health had been in decline for a couple of years and at 89, she was not well, but still of sound mind.  She is the quintessential Grandma – her Grandchildren can do no wrong, and the parents are to be disregarded completely.  Minnie climbed up in her lap and when I tried to tell her not to climb all over Grandma, she did the verbal smack down I had heard hundreds of times in my life, but it used to be directed at my mom in reference to me or my brother.  It was neat to see her embrace her newest great grandchildren.  We have a large family and my grandparents were already great great grandparents, but my children felt the love that I had known my entire life.  Unwavering support.  My grandpa asked lots of questions in our weekly phone calls, but they were infatuated with my children and my children knew it.

My cousins mobilized and moved all the fun stuff we had planned to the week we were there instead.  There were cookouts, fishing, tons of time getting to know their cousins.  They were welcomed.  Mickey was great.  He was mostly under control the entire trip.  He was relieved that Great Grandpa was doing well and by the time we left, he had been moved to a rehab facility in the same assisted care facility my Grandmother lived in.  So, they were able to spend even more time together.  It was the perfect trip.

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Minnie fishing with her cousin and Mickey fishing with another cousin.

The trip home though we seemed to see setbacks.  First, Mickey was, and still is, pretty adamant that we belong in Indiana with our family.  He wants my parents and my brother to go too.  He doesn’t understand why we would ever live so far away.

After we got home there was further regression.  Lots of meltdowns and more issues than we had seen in the month before the trip.  I thought we would never be able to take a trip again.  About two weeks after we got home, in frustration I said “I don’t get it Mickey, you were doing so well.  What happened?”  He burst into tears and said “If your Grandpa can die than so can mine”.  This was a huge aha moment for me and also a big moment for him. He would associate things in a way I wouldn’t have thought of.  His fear over my dad dying was real and it had never occurred to him until my Grandpa was ill.  I explained that Great Grandpa was my Dad’s father and there was no reason to think that he wouldn’t live to be as old as his parents, which meant we could have 30 more years with him.  That seem to mollify him and we started to progress again, that one issue could derail months of work.  We would see that type of regression time and time again, but usually once we identified the underlying cause, we could get him back.

That for me is the frustrating part of Autism. Mickey is very verbal, but struggles to verbalize feelings, fears or concerns.  He will bottle up things like that and his concerns manifest themselves in behavior.  That has improved somewhat, but not as much as I would like.

May 2012

We were seeing more progress.  Mickey attended his first field trip (I had to go, but he did well).  school was going better – most of the time.  I got a nice mix of positives and negatives.  The negatives were still terrible, but meltdowns at home were calming.  Meltdowns at school were less. Academically he was struggling – way behind his classmates.  Sight words were horrible, reading level was non-existent.  We were heading into the final weeks of kindergarten and he was nearly a full school year behind.  Part of the problem was behavior, the rest we assumed was his low IQ and it seemed that the doctor may have been correct.

We also got our adoption date – May 29, 2012.  The day after memorial day and the Tuesday after the last day of school.  Mickey went ahead and changed his name at school – if his old name was on a paper, he would scratch it out and write his soon to be new last name.  He smiled more.  His therapy continued at an intense level, still 6 days a week.  Daycare found that he did better in the pre-k room rather than the school aged classroom.

Minnie geared up for her first ballet and tap recital. I pierced her ears, because she wanted me to and because I finally could.  I tentatively began making a plan to take a vacation to Indiana to visit our extended family – my Grandparents had not yet met the kids, and some of my cousins who hadn’t been able to visit. I explained to my cousin everything she would need to know about us staying with her.  Mickey couldn’t wait.

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One interesting thing I discovered with both my children is that they cling to family. Not just the people, but they were both anxious to “fit” and be part of the family.  I was incredibly lucky that my entire family accepted them immediately, from my grandparents through my cousins.  Their favorite toys and stuffed animals were those that were mine and my brother’s when we were little.  They still are.  They both have an unusual reverence for family heirlooms and items that came from my Grandparents.

Mickey was very excited about his kindergarten end of year program.  There were songs and he tried to keep them a secret, but could be found singing them almost any waking moment.  I went and was delighted by how well he stood there and performed them.  His gestures were off, he forgot to do half of them, he was distracted, but he did it.  This was a major win for us.  After the performance we went back to the class for presentation of the certificates of completion.  His teacher presented them in alphabetical order, but skipped Mickey.  I briefly panicked that this was how I was finding out that he wouldn’t be moving on from kindergarten.  When she got to the end, she started to cry.  She explained to the class that adoption day was 4 days away and that they had opted to do his certificate in his new name.  His first official document.  Mickey cried.  His para pro cried, I cried, and half the parents were tearing up.  It was awesome.  He was so proud of his certificate with his new name.

Adoption day dawned.  My parents met us at the court.  I ordered a special sugar free cake (sugar made Mickey crazy angry) and planned a special lunch after court.  My mom planned to take the kids to her office to introduce them to her co-workers.  We were hopeful that Mickey could handle this, but while we were slowly able to make plans with him, but we always had a backup plan for what happened if he couldn’t handle it.

The judge took us to a conference room.  The kids and I became a family officially.  Mickey told every single person that he encountered that it was “Adoption Day!!”.  It was adorable.  We went to a nice restaurant and had a great meal. Mickey was awesome.  Minnie was presented by her grandparents with the necklace that Grandpa gave Grandma when they were dating some 45 years earlier.  Mickey was presented with a car bracelet that had been my brother’s when he was little.  I gave them picture frames engraved with their new names, the date and the words “Forever Family”.  It was an emotional day and one of the best for Mickey’s behavior we had ever had. While my mom took them to her office, I went and had the photo taken at our adoption day lunch printed for their new frames.

I knew without a shadow of a doubt that i had made the right decision.  I type this note more than three years later and I am emotional. It was one of the best days of my life.  Our family became complete.  I no longer feared that DFACS was going to change their mind. They were mine and I was theirs.  My son and my daughter. For real.

April 2012

I woke up to find Minnie, Mickey and Mason the dog lying on the floor of Minnie’s room.  Mickey was singing our last name out to her, one letter at a time.  He was teaching her to spell her new last name, in preparation for the adoption.  I stood in the hall, out of their view and cried.  These were happy tears.  They were giggling, singing and snuggled with their new puppy.  It was a delightful moment.

Mason also proved to be both a pain in the rear and perhaps the best thing we could have done.  He was an excellent coping skill.  Never going to be accused of being the smartest dog on the block, he would walk right up to Mickey during his rages.  Mickey wouldn’t hurt Mason, I was pretty sure, but I kept a very close eye.  Something miraculous happened though.  When Mickey spotted Mason he would drop to the floor and Mason would lick his ear.  Mickey would be giggling in seconds.  Rage over.  He would sit with Mason until fully calm and move on.  We hadn’t ever seen this before.

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We were a month into 6 days a week therapy.  Elise came out for the final visit with the release paperwork needed for me to file for the adoption court date.  Mickey was thrilled.  Minnie asked if she could finally get her ears pierced (not permitted while she was in foster care).  Things were still brutal, there was trouble at school, Mickey was highly unpredictable, but there was progress. A light at the end of the tunnel….

I don’t know if it was the therapy, the dog, the adoption finalization, or finally settling in as a family, but things were better.  I think it was a combination of all four things, plus it is possible that I was starting to get a handle on this parenting thing.  Mason chewed everything in sight and proved to be a Houdini when it came to crates, Minnie was glued to his side, Mickey just seemed calmer, overall.  He was starting to identify anger using a color chart the therapists and the school were using.  It was a thermometer and while he didn’t use the word anger, he would tell me he “was on red” and we would do deep breathing or what he called lion breaths.  That was maybe 5-10% of the time, but that meant 5-10% less rages.  Progress….

She thought I was crazy

Nothing much changed with regards to behavior through the early part of March.  Things were slightly calmer, but the meltdowns were still frequent enough that I never let my guard down.  But, on March 10, 2012 we had a breakthrough.  One we didn’t expect. Elise came out for her monthly visit.  She informed us the six month waiting period would be up in a month.  The conversation went like this:

Elise: So, next month marks the 6 month point.  I assume with everything going on, you don’t want to finalize, right?

Me: No.  I do want to finalize.

Elise: Are you crazy…I mean, why?

Me: I love Minnie and Mickey.  Things are rough, I admit.  But, realistically, DFACS isn’t providing us much support, and your every visit sends Mickey backwards.  He wants to finalize.  I want to finalize.  I love them and they are my children.  I am not sending them back, so I see no benefit to prolonging the process. We will get mickey the help.  We have a team in place, and we will get there.

Elise: Mickey doesn’t understand adoption. Why do you think he wants to finalize? Mickey, do you know what adoption means?

Mickey: It means my last name will be the same as Momma’s, Grandma’s and Grandpa’s, and Uncles.  And we don’t have to see you anymore.

I was somewhat embarrassed by the rudeness of that statement, but Elise wasn’t upset.

Elise: I am surprised, but I will sign off.  The thing we want most is for the kids not to feel they need us.  I will release you on April 11.  We can then file for a court date and start the finalization process.

Was it crazy? Yes.  Was it the right thing? Yes.  If he were my biological son, I wouldn’t send him out of our home (permanently). A disruption could have been the beginning of the end for him. The thought of sending him back into a system that felt inept scared me.  It scared me for Minnie too.  I couldn’t stand the thought of losing her either.  She was my bright and shining light, no matter how dark our days were, she delighted me with her wide eyed wonder.

For every meltdown Mickey had, Minnie blew me away with her kindness.  Her brother scared her, but she tried to comfort him.  She had grown comfortable with animals, especially my elderly cancer afflicted cat.  She put a dozen baby dolls to bed each night, she brought me stuffed animals to sleep with, each one carefully chosen by her.  She charmed people everywhere she went.  She loved all things pink, purple or sparkly.  She complimented total strangers on their beautiful hair, their handsome postal uniform, their beautiful dairy queen uniforms.

Mickey’s teachers loved him, despite his unpredictability.  My parent’s were delighted by them both. Mickey could make me laugh in a way no one could.  His view of the world was fascinating.  And to add to the chaos, we found the dog that Minnie begged for and that Mickey wasn’t afraid of.  Maybe Elise was right, I was crazy.  The last thing we needed was more chaos in our house.  I was barely holding on as it was, with a sick cat, two kids and a full time job, we didn’t need a 10 month old puppy.  Yet, there was something about this dog.  Mason joined the family on March 12th, 2012.  We were all in love.

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The day that rocked us to our core

Feb 2012 –

I made the decision to go ahead and pay for Risperdol.  The frequency and intensity of Mickey’s rages continued to increase.  School was a problem, daycare was a problem and home was the worst of all.

On Valentine’s day, not a holiday I have ever been a fan of anyway, we came to a tipping point.  It was a work/school day and a daycare day for Mickey.  As was our normal routine, I commuted home, picked up Minnie and headed to KRK to get Mickey.  Mickey had been pretty good that afternoon, per the director.  I discovered that I would hold my breath every day until I hit the door.  I was running out of childcare options, so I feared the day KRK said he had to go. I released my breath and went to the gym to get him.  Normally he would see me and come running, but today they were playing on the Wii and he didn’t want to go.  He lost it. He threw himself down on the ground screaming.  The other kids were freaked out.  Minnie started to cry.  Mickey ran from me when I tried to calm him.  He overturned furniture, and started throwing chairs.  The other kids were cleared from the room and the owner and director came in to help.  It took 5 adults 2 hours to get him out of the building and each of us was bleeding and bruised at the end. I got him to the car and he started up again and it took another hour and a police officer to get him in a car seat so we could drive home.

I fed them and put them in bed.  I called Mickey’s therapist, Vanessa.  I was in tears and asked about having him admitted to somewhere for inpatient care.  She said there was a place and she would look into it in the morning and see what the admission process was.  I called my mom and told her, for the first time, that I didn’t think I could do this.  Mickey had to leave – hopefully not permanently, but he was a danger to our home and most importantly, Minnie.  Her nightmares were increasing and she was scared to play with Mickey.

In their foster home there had been much older girls and then a pack of boys, Minnie was the youngest and the only non-teen girl.  Minnie and Mickey had never really played together.  They never really had a relationship, though they had always been in the same house.  This was another area of sadness for me, but hardly near the top of my priority list at that moment.

I called Jesse and talked to her – begged her for help or advice.  She told me the true story.  She never wanted the kids split.  But, her family had decided that they couldn’t keep Mickey.  He was too volatile and they couldn’t keep fostering if he was there.  One of her daughters had voted against adopting Minnie and Mickey.  I never asked which one.  They never wanted to split the kids, they just knew that they couldn’t provide the services that Mickey needed. She had wanted to adopt them both anyway, but she couldn’t divide her family like that. She didn’t have much in the way of advice, but she was able to provide me with some comfort in that she “got it” better than anybody else.  I also found out that I was the 3rd adoption placement. The previous two were both 2-parent families that backed out because of Mickey.

I began to consider disrupting the adoption.  Not seriously, because I suspected that put Mickey in a group home and at 6, that wasn’t the life I wanted for him.  While our lives were hell, there was also a charming, sweet kid in there somewhere and he had my heart….and of course Minnie – she had everyone’s heart. But, DFACS wouldn’t help us.  They wouldn’t find us services, they wouldn’t pay for meds (which they should have been, the adoption wasn’t final), and they often blew off any requests for help.  They came out and did their monthly visits, read the notes from the teachers, listened to me tell them the horrors and Elise left and filed a report…then nothing happened.

Vanessa came out the next day with Matt.  She said she had started the paperwork for inpatient admission.  In the meantime, she had mobilized a team of CSI’s and added Matt to our schedule.  This would now have us seeing someone 6 days a week – 1 CSI would visit his school and 1 his daycare, the rest would be in the evening at our home.  Matt was a family therapist, and when they left after 2 hours, nothing was resolved, but I felt like we were doing somthing.  Mickey was back on Risperdol, therapists were in place and an inpatient program was in the works.  So, we trudged on.  The month had his first suspension from school – the teachers and administrators trained in restraint were out at training, and he made it 40 minutes into the day without them.  Any day when there was a break in routine was a disaster, and those teachers being out threw his day….but, to be fair, it didn’t take much.

After school care – Daycare #2 & #3

1/26/2012 – Nikki texted me at work to let me know that Mickey had attacked her while holding the baby.  He then threw a chair at the two year old.  She said we needed to talk.

When I arrived Nikki was crying.  She loved Mickey and in 20+ years of childcare had never had to ask a child to leave.  She was devastated.  We had always known this was a trial, but she couldn’t jeopardize her business nor the safety of the other children. Especially since Mickey was only part time. She feared I would pull Minnie out as well, but I wasn’t angry.  I knew what Mickey was capable of and Minnie was thriving there.  She loved her Ms. Nikki and so did I.  Now the question was, what do I do with Mickey?  As it was Thursday, Nikki said she would keep him on Friday and would until I found another option.

I called the school and spoke with the head of the after school program.  I explained Mickey’s needs and behaviors and asked if they could take that on.  She said she would talk to his teacher and called me back with an affirmative response.  He was scheduled to start Monday the 30th.

1/30 – ASP

46 minutes after school ended, I was notified that they could not handle his issues.  They said they would try for two more days – since I had paid for a week, plus registration fees. I called Carl again for help to find out who had watched his son when he was younger.  I was directed to a different Kids R Kids than we had attempted first and a wonderful assistant director.

On 1/31, I met with the assistant director at KRK and I was brutally honest.  She said “no problem”.  Of course, I had heard that before, but I had no other options, so I took her at her word. Mickey would begin the next day.  They would transport him from school to there.

2/1 – Mickey’s first day at KRK.  The assistant director drove the daycare bus and had to pull over on the way to the daycare after picking him up from school.  She pulled over and told him to get out.  Mickey got freaked out and told me “Ms M does not play momma”.  She had few bus issues with him for the remainder of his time there.  This would be an important clue.  Mickey did best with firm boundaries and immediate consequences – if one was to nice, he would run over you, if one was wishy washy….well, forget it.

As things continued to decline at home and school and daycare was a daily struggle, we continues trying to get the Risperdol covered.  The psychiatrist continued to prescribe it and appeal it regularly.  I also notified DFACS of medication changes.  We had tried to up the Trileptal, but that raised the tantrum count to 10-20 a day and absolute defiance.  The therapy group had added a CSI (community support intervention) one day a week.  She was to help with behavior outside of the home and work with his therapist.  She could go to the grocery store with us, or go to his daycare, etc. At this time, they suggested we up the CSI to 4 days a week.

We had gone somewhere as a family, with my parents.  It was a bit of a drive and we were on our way home nearly 3 hours after the kids’ bedtime.  Mickey was tired and whining, but he told me he couldn’t sleep without his “night night meds”.  I found this disturbing.  The kids was exhausted, so as though we didn’t have enough going on, I talked to the psychiatrist about weaning off the Clonodine.  I figured it couldn’t be worse, and we could always go back to it, but we wanted to try.  As Clonidine is a blood pressure med, there shouldn’t have been any side effects when taking him off.  We tried it and the poor child threw up 8 times and was shaking so badly he couldn’t even take a sip of water. So we weaned instead and cut the pills down very gradually over the next several weeks.