Busy & Bored

I haven’t been around in the blogsphere lately. I keep trying to force myself to write something but the more I think about it, I just don’t want to. I don’t think it’s depression. It doesn’t feel like the kind of depression that I’m typically accustomed to dealing with but, then again, I seem to not recognize my depression as such until I’m past the point in which sitting down to write about it would be helpful. I guess maybe I’m not the best judge on the matter.

I’d like to think it’s more of a distracted state.

We had a hearing on our Motion to bring Pickle home last Tuesday. It was approved with flying colors. I spent the rest of the week running around trying to tie up loose ends and getting other needed pieces in place. He started back at the high school yesterday and is really happy about they way everything has turned out. I was probably more excited about school paperwork than I had ever been or will be. We even filled out his FAFSA for next year. That’s been the good distraction.

While I haven’t been dealing with Pickle stuff, I’ve mostly been laid up with this awful back pain. It has been all consuming, driven me to tears and the brink of madness and other than this brief little statement on the matter, I really don’t feel like diving into the cesspool of stuff surrounding it. I’m just thankful that my epidural spinal injection is tomorrow and that I can at least count on some sort of resolution where the pain goes buh-bye to follow. That’s the bad distraction.

What I’m trying to say is that I’ve either been too busy to write or just flat out not wanting to do much of anything when I don’t have to.

Change Ahead

I have not been writing much of my own content lately because I have been preoccupied with things going on here and preparing for a potentially BIG change within our lives.  We have arrived at a point with Pickle in which he is pushing up against a ceiling right now in placement. When this has happened in the past, he has regressed. The last thing I want is to see all the hard work and efforts everyone has put in go away, but the question has now become what is in his best interest and where do we go from here.  I also know that every time we have presented Pickle with an obtainable goal, he has shown us that he is able to do it and I would really like to see what he can do.

On our end, the circumstances that led us to seek Children Service’s involvement are no longer present. Pickle is not the same person he was coming into the situation or even three months ago and neither are his siblings or Jer and I.
I know that what Pickle needs is more real world experience that he is not going to be able to obtain within any paid placement with staff being paid to oversee his every move. I think he needs guidance from his parents and the mentoring available through his peers and siblings to learn to navigate the world as he would like to know it. So, we have decided to try and bring him home and attend the high school for his last nine weeks of his senior year.
This is not something that Jer and I are doing on a whim. We’ve re-evaluated this situation at every turn and right now, we see that he has maxed out what he can do in the system and that home is the best option. We have already agreed to a voluntary six month plan with Children Services because we know it is in Pickle’s best interest to ensure continuity of care and have the proper supports in place.  We are also realistic and know we will still need services for job training and placement, education planning, behavioral counseling and waivers/vouchers for things like summer preoccupation/camp and possibly respite to ensure that nothing/no one becomes stagnant.
I don’t know what will happen. I don’t know how long home will be the best option, but I know right now it is and may continue to be throughout his attendance at college. But I am not envisioning home to be a permanent placement. Only because I am mother who wants for my child what any other mother wants, to see her child reach his fullest potential and him living at home for the rest of his life is not Pickle’s fullest potential. I also think that allowing him to come home will give us the opportunity to see if Pickle may be able to go beyond a group home setting and with supports in place he may be able to achieve what he ultimately wants, which is to reside on his own.
The MR/DD board is concerned that we are setting him, and potentially our family, up for failure. I could not say why they’ve developed this stance and I really don’t want to get too caught up on that statement or those feelings. I just know what I know. And I know that I’m not asking DD to do anything that they wouldn’t normally do for a client. I’m only asking that they begin the process now instead of waiting for him to age out of the system at 21.
Everyone else is on board and has arrived at the same conclusion we have.
Hopefully, after the meeting with all the parties involved tomorrow we will have a better idea of the big picture.
I would ask that you join me in prayer for God’s will in this situation, not my own.

In a pickle

My eldest son is always in a pickle. This is how he got his nickname. Except this story isn’t nearly as cute as say, the time he put a slide on top of our picnic table so he could “fly like Superman” and flew right into the top of a chain link fence, requiring stitches.

No, this story unhinged me for a couple days.

The first incident involved him and his friend conspiring to steal a box of cookies bought for the group home where he lives during their return trip from the grocery store. I explained that his side of the story made no sense at all and he was the only one who had anything to gain from lying which is how lying works. He remains insistent that he was set up by staff. They are making it up and he’s done talking about it.

He has a very warped perception of reality which does nothing but feed his preoccupation and paranoia regarding injustice.

The second incident occurred the night of the Super Bowl.  The staff could not find another young man and Pickle’s friend. When they searched Pickle room, lo and behold, the kid was hiding in Pickle’s closet and Pickle gave what seemed to be a very rehearsed line of “Oh look, there’s someone hiding in my closet”. Unfortunately, he’s not the best performer. That fact is completely lost on him though. It is very easy to tell when he is attempting to be deceitful due to his cognitive disability.

This incident was what left me unhinged. It stirred the stank, shit pot of emotion that I keep in a very deep and protected part of my soul. A place where I keep the darkness of Pickle’s horrific, child sexual abuse. The fears of him becoming perpetrator.

I know it was this fear that caused my psyche to instinctively set off anger. Anger that the staff of the group home can’t keep their shit together. After all, THIS is exactly why Pickle doesn’t live with us. He is a danger to my other two children. They are too “stimulating” for him and his cognitive disability doesn’t allow him to comprehend, much less recognize, triggers. Him not living with us is the huge factor of my own guilt and shame as a mother. Try as I may to reconcile it and knowing it’s the best thing for all of my children, it’s still hard to not feel like I have failed him. People try to comfort me, but who really understands what that is besides myself? The only person I have crossed paths with who can somewhat relate to the situation is only at the beginning of her journey.

It’s a very convoluted, hard thing … the likes of which I cannot elaborate.

1st job for 1st born

Today will be Pickle’s first day at his first job. wow. It’s just incredible to me.

He will be working floor stock in retail. He will have an aide provided through Opportunities for Ohioans with Disabilities working 4 hours, Monday-Friday and collect a paycheck. This is the part he is most excited about. He already has plans to take his kitten, Cortana, to the vet after he gets his first one.

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It did my heart wonders to hear the pride in his voice as he told my Dad the news. Dad jumped out of his chair to hug him and said, “That’s wonderful.” My Pickle was beaming. I soaked it all up. Every last drop.

I’m so incredibly proud of him. Even when he’s unsure of what lies ahead, he goes full steam ahead with a positive attitude. To see him happy and reaching for his full potential and being proactive in having his best life possible is all I’ve ever wanted for him.

I can’t wait to hear about his new adventures into this mysterious, adult terrain.

Mom is so proud of you, son.

Pickled, but still damn good.

I have a meeting in a few hours. We’re supposed to be discussing “future planning”. It’s exciting to discuss my son’s future and all at the same time its filling me with anxiety. High school graduation is a mere few months away and after that … the world.

Considering that no one ever thought he could graduate high school, Im elated. He DID IT! He beat the dealer with the cards stacked against him. I can not even find the words to convey how proud I am. Also, I get the added knowledge of having proven someone wrong. So, HA! On the other hand, the hand I keep closed to the world, Im freaking the fuck out. The real world awaits and I have no idea how to properly advocate and navigate for him in it.

I always thought that the hard part raising a child with special needs would be childhood. I dont know why I thought crossing the magical adulthood threshold of eighteen would mean anything more than that. As it turns out, my job in raising is not nearly over. The reality is this: you are never done raising a child, any child. Your job as a parent continues until the day you die and even then your lessons may not fully reach their ultimate teaching value until post mortem.  When you have a special needs child the role is just more hands on and nose in their business.

Because my Pickle has made so mnay strides since making the hard decision to place him in a group home setting with other adolescent males with developmental disabilities, I think our treatment team may have gotten a little ahead of themselves. In early December we were on a graduation, independent living track with parental and county board check and balances in place. Now, I’m finding out that his dream of attending college to pursue an occupation in computer repair could be a reality. HIs extended home visit over the holidays also revealed some major concerns that could never have been caught in the group home setting. With staff scheduled around the clock in a group home setting, there is always someone to close doors when coming and going, make sure foods are properly used and stored, medications are dispensed as prescribed, that money is handled accordingly. Obviously, all these things are available to him here at home as well, but I put more of the responsibility on him, whereas, staff are being paid to do these things as their own responsibilities.

The reality of all this hitting over the holidays while my husband and I were desperately trying not to drown our marriage in bitter waters was a bit much. In the thick of it I didn’t realize that was what was going on, but standing outside of it all now, its plain to see. It hit hard that many of things we’re dealing with now are things we will be dealing with for the rest of our lives. Its overwhelming.

What Im most thankful for is that I wasnt overcome with resentment while having this revelation. I finally feel past the part where I think that this isn’t fair and how nice it must be for my Ex and his ex to be living their lives without worrying about who will look in on their grown child should I land myself in the hospital…again. It just is what it is. I know, everybody knows, no matter what has been said, that Ive stepped in to fill shoes someone carelessly tossed aside and even though, I make mistakes I at least had the kohanas to step up to the plate and take a swing at it.

We may not hit a homerun at every at bat, but we’re doing pretty damn good.

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Parent Panel Speech

I just got done speaking at a cross-training seminar for various county agencies who provide services for at-risk youth on the “Parent Perspective”. The idea was to give counselors, special education teachers, MR/DD workers, county protective service case workers, etc, etc the perspective of the parent utilizing these services or involved with these agencies. A lot of times when these people are working with parents, they are so busy taking notes and developing plans and ideas of what they can or have to do in their head while they meet with the parents that they don’t always HEAR us. The ladies leading the training wanted them to do nothing but actually listen to the stories, behind actual cases.

When I was approached about this I thought it was an excellent idea. It still is an excellent idea. In fact – I recommend it. Brilliant! What better way to cut through red tape and get people from all these different agencies to realize how great the sum of all their parts is put together.

I guess I just didn’t realize how emotionally exhausting it would be to really relive the story of Pickle. It’s been such a long road. It’s so hard to talk about everything from the day I met my pickle, raising a child traumatized from a sexual assault, raising him as a step-parent to adopting him, his “Dad” walking out & now helping the Jedi, another traumatized child, cope from the exposure to inappropriate behaviors and aggression, and Pickle having to leave the home.

It’s difficult to share with a room full of strangers how to reconcile the dreams of the family you thought you’d have or even the ideas of what others think a family is, with the reality of what it actually is and living it day to day. I’m sure every mother/wife might struggle with that to some extent, but not everybody is dealing with having an adopted special needs child with such severe cognitive/psychological issues that impact the literal safety of the other children in the home that the adopted child must be removed and the overwhelmingly sense of guilt and failure the accompanies.

I got to tell them what services worked for me, what didn’t, what could work better. It’s hard to find enough words to express to the group how I might be another case they are working, that they can put away for the day and go home….but for a parent living it…this is my life, this is my child and I live it everyday and I do need help…lots of it….and so hard to admit it to yourself, much less ask for it.

I really hope the points came across and at the very least the prospective helps…someone…anyone…a little more.

That will be worth it.

Silence/BROKEN

I’m finally ready to talk about it.

Maybe it’s not so much of a want to talk about it, but maybe I feel like I need to.

The last few months have been an emotional roller-coaster of epic proportion.

Pickle is no longer living here. It brings tears to my eyes just typing it. Living it is something quite different. I’ve been told for quite some time that he would one day need to be some sort of assisted living scenario, I just didn’t think it would come so soon.

A couple months ago, I was FINALLY able to get him into treatment with a therapist who I actually saw him make leaps and bounds with. It was a good thing, it still is, but in the midst of that counseling a lot of things started to surface. I found out that there had been a lot more things going on between my children in the EX’s care than I could have ever imagined. Although these are not the sorts of things a mothers mind wants to imagine or even comprehend, I incidentally also caught him being sexually inappropriate and opportunistic.

Pickle was horrifically sexually abused as a toddler while residing with his biological mother, so this is a demon I am aware he struggles with. Hence, why I am constantly stressed and half-sleeping, listening, watching…..etc. Once you mentally become aware of such things, they don’t ever go away. I always knew this was possible, I just hoped it wouldn’t. With him entering puberty and the things he began revealing in counseling I developed a safety plan in which Jedi stayed the night at my parents house (they live three blocks away) and complete the rest of daily routine in typical fashion. He’d go to school, ride the bus home with his sister, do his homework, have dinner and at bedtime he’d go to my parents to sleep. He spent his weekend here, except for bedtime. It wasn’t easy.  The hardest thing I ever had to do. It hurt like hell.

There were times when I felt I was betraying one for the other. It was hard to wrap my head around how I ended up in a position where my biological son would be sent away for his protection, while my adoptive son would remain with little inconvenience in his life. None of the counselors involved thought this was good, but agreed there was nothing else to do. As it turned out, with my younger son out of the house, older son started becoming opportunistic and, again, unimaginable, started to target my daughter. Typing it now, I still don’t know I came out the other end and somehow kept all these relationships in tack.

After having about a dozen people tell me over and over and over again that I had done everything that I could and that it was in his best interest to get him into intensive, inpatient treatment….I finally got it through my thick skull that it wasn’t giving up….it was actually the best hope there was not just for him but my other two children. The worst part of all of this, or the hardest thing for me to overcome mentally was that Children Services had to take custody in order for the treatment to be covered. They call this dependency. It’s when a child requires care beyond the ability of any guardian to provide. The costs of this treatment are astronomical. $500 PER DAY. Even with private funding from groups organized for this purpose, we were still looking at $200-$300 PER DAY, which only very wealthy people could afford. Beyond that, as I’ve been told, our home environment, with two younger children, is too stimulating for him at this time. So, I’ve got to learn more than I ever wanted to know about the Juvenile Court system as well because he had to be adjudicated and a bunch of other legal mumbo jumbo that is pointless to get into.  I just keep telling myself that it could’ve been much worse. He could have done worse, outside of the home, been charged and that would have put him in sex offender program that likely would have caused him to be re-victimized because of his cognition issues/low I.Q. So he is safe and the other two children are too.

It’s just incredibly hard not having him here. Even though he required twenty-four hour supervision and our lives completely revolved around him, I wish there was something more I could’ve done. I wish I could heal his memories…his soul. I can’t even count the number of nights I’ve cried myself to sleep over all of this.

Whats made it even more emotional has been the final bow of the EX in the children’s life. I guess being under the microscope with everything that was going on with the kids was more than he could handle. A couple days after he was told that he would be required to go through dependency (drug/alochol) counseling and testing to remain involved through the pendency of Children Services involvement he decided that he wanted my husband to adopt the kids. If there was ever any hope in me for him to turn out to be a decent father figure to our children, much less just a decent human being….it is gone. I could have never imagined that he would sign away his kids, like possessions, in exchange for being let off the child support hook. It was his ONLY concern in the processing of the required legal paperwork. To say I am disgusted … is putting it mildly.

None of this is what I want for my children.

The only peace I have is holding onto the hope that all of this will allow all of the kids to be restored in ways that lead them to have healthy, happy, beautiful, full adult lives someday.

And every pain and sacrifice to that end, is worth it.

Shit Happens

I’m frustrated.

I’m also tired which I know is just adding to the frustration.

Recent events have led back to insomnia. I just can’t get my mind to stop racing with out taking a little pill and I’m paranoid about becoming dependent on little pills, so I avoid them. I know, I have too many hang ups.

It’s not so much that I’m afraid I’ll become an addict or abuser, but I don’t want to be dependent on a pill or anything to get me through my days or nights. I realize that at this point in my life, I may need to take the pills to deal with situational circumstances…and I keep reminding myself that the situation will resolve and life will go on and the pills can go buh bye.

Oh, if I could only fast forward to the point where all of this makes sense in the big picture.

I’m frustrated with Pickle. No, I’m not frustrated with him, I’m frustrated with the circumstances we’re facing – together. While I usually handle this much more gracefully, there are points where it’s stressful and frustrating and this is one of those points. I’ve spent the last year trying to get his epilepsy under control and as we were getting that under wraps, behavioral issues flared up because of his strained relationship with EX.

Everyone involved with him has commented on how much more animated and interactive he has become since supervised visits went back into effect. It is as if the weight of the world has been lifted off his shoulders. But last week as we were dealing with other traumas for other children, he exhibited a resolved behavior. At first, I slightly suspected he was acting out because my attention was on the other two and well, he just doesn’t deal well without having all the attention he is accustomed to.

Because he struggles so much with communicating what is going on with him, the most I could understand is that he didnt have enough time. Its as if he decided it would be neat to see how long he could hold it but forgot that he couldn’t hold it. Bizarre, I know.

So after three days of wetting, I had to drag him in to see his urologist. He does have some kidney/reflux issues and I had to be sure there wasn’t a physical problem before we dealt with the behavior. Kidneys were ok, urine was ok, but the ultrasound revealed that he was holding it in, both ends….which means the backend was putting to much pressure on the front end and couple that with him holding it, for reasons beyond anyone’s comprehension, and you have a mess, literally.

The solution is going back to his bathroom schedule. The doctor gives him these instructions, they are familiar to us, not so bad. Until I make the realization later in the day that this concept was a little too much for him and so he was literally, just going INTO the bathroom and sitting fully clothed on top of the lid for 5 mins. It was a nuisance but also sorta funny.
I had to break it down for him, walking him to the bathroom, explaining in as much detail as possible what it was he needed to do, without physically undoing his pants and placing him on the toilet.

Unless, you have dealt with this, I cannot explain how completely frustrating it is. I also cannot make you understand how hard it is to break down basic concepts to someone with little to no short term memory. Its pretty hard, especially when by all accounts, he should understand them. I catch myself thinking: ‘Really, I have to explain to a 13 yr old how to go to the bathroom?’ Where does this information go? Is it ever going to get better? Does this child need anymore obstacles? If you had told me 10 years ago when I met him that I would be raising him alone, I couldn’t have fathomed it. It’d be nice to have a little pity party for myself. Boo hoo, I adopted EX’s child and now he’s bailed and it’s so hard, boo hoo….but I don’t have time. And honestly, I almost feel guilty for feeling frustrated cause as hard as it is on me, it’s gotta be harder on him. He’s living all this. He didn’t ask for this either. We’re both just trying to figure out this puzzle with all its pieces.

Finally got an appointment with a new behavioral therapist this afternoon. Hoping that will yield positive results for the kid.

Off to close my eyes for an hour or so before I put on my strong, Mom mask again.

***UPDATE***

I didn’t get to close my eyes, I couldn’t sleep. Mind was racing. However, I did put on the strong, Mom mask again and was able to pick up son and take him to his appointment. While we were sitting in the waiting room, this foul smell kept bothering me and then the sudden realization struck me:

OH SHIT – literally. He wasn’t phased at all. Took him to the bathroom, cleaned it out as best I could. Come out of bathroom, approached by therapist, explain situation, she isn’t phased….she realizes he isn’t phased…appointment proceeds as planned, with the addition of a foul odor.

Therapist commended me. I don’t know why but this made me cry. She told me that I had done a wonderful job with him despite the circumstances. She recognized that this situation can’t be easy because I “inherited” it. I didn’t sign up for this willingly, but I’m making the most of it. Sometimes its nice to be validated. But then I felt like it was the good news before the bad.

She point blank told me that my son would never go to college or get married or have children and that he would more than likely live in a group home after graduation. She assured me that him experiencing independence outside of the home without ME is essential to his development. I’m sorry, I understand that there is expertise and experience and resources that I don’t have that could help him and I know that I want to be as successful as he can possibly be but this is a concept I couldn’t wrap my head around…someone else taking care of my child?

It’s almost funny that I am the one questioning letting someone else take care of my child, when he will no longer be a “child”….when I, in fact, am raising this child because two other people in his life didn’t question letting someone else take care of their child.  Oh, the irony.

Too much.                          BLOG END.