Finding Fulfillment

So there has been a lot going on. Not even sure where to begin. I suppose I can say I am a bit anxious, restless - a little lost even.  Things with my daughter haven’t improved much. In fact, in some areas she is regressing. She’s acting more like a baby, going back to asking for things or expressing herself in one word instead of giving me a full sentence.  As things with her continue to progress (or regress) and as I work with my son to make sure he keeps his grades up and turns into the God-fearing young man we would like him to be, I find myself questioning my priorities. Right now I work full time and I have to say lately, I haven’t been enjoying it.

As I navigate the winding roads of childhood mental illness, crazy insurance companies and a broken post-adoption child welfare system, I am coming to realize that my passion lies in working with families like me who need assistance and don’t know where to turn. I spend countless hours on the phone, the Internet, at conferences, you name it, taking care of my daughter’s needs and learning all I can. You can spend hours on the phone arguing with the insurance company, still more hours making appointments, recording her moods and actions, trying to decipher what homework she has if any, returning books she started reading in class and then forgot to put back, figuring out where she hid the wrappers from the fruit snacks she ate without permission, and on and on. In the meantime, I work to make sure my son’s needs are met, that my husband gets attention, that the house is clean, dishes put away, lunches fixed, dinner ready and… you get the picture.

Now by no means do I think I am special, many women are facing the same scenarios I have just described but I have to say, looking at my list, where in the world do I fit in 8 hours (or more) of work? Things at my office are changing, and frankly I don’t like some of what I am seeing. My desire to get up and come every day is pretty non-existent. I wonder if it’s God’s way of kicking me in the butt, telling me to really begin working on my passion, on what really fulfills me. I believe that right now, He is primarily calling me to be a wife and mother but I also believe it is my purpose to work with families of special needs children and share what I have learned and help them use the tools I’ve gained in this battle and believe me, it IS a battle.

It’s a shame that the system forces you to fight for what your child has a right to in the first place. Often I think many hope if they make it too difficult, you’ll give up and just say “forget it.” Believe me, I have had those days, those moments. But if I quit fighting for what they both deserve, then I feel like I’ve quit on them, and I just can’t do that. My tenacity doesn’t always make me popular - some have even made comments that were inappropriate or just plain untrue. But in the end, when I have just another small victory for my son or daughter, or when someone got my name from a friend and I was able to help them make things better for their children, it fills me with more joy than my 8 to 5 ever could.

When Being Mommy Doesn't Make Me Feel Warm and Fuzzy

When my husband and I decided to try having children, I knew that more than anything, I wanted to be a mother.  I knew that pregnancy wouldn’t come easy and I didn’t want to spend time on fertility treatments. While that path is perfectly OK for many women, I was afraid that trying to have a baby would consume me. I didn’t want to lose sight of my goal – to be a mom. Since we had never been opposed to adoption, we decided to begin the process. We became foster parents with the intent to adopt – that was more than 13 years ago.

Now, with a special needs daughter and a son in the depths of the middle school/teenage blues, there are nights when I wonder if I will ever get this parenting thing right. The feeling has come with some guilt, but I might as well admit it – there are times being a mom isn’t as much fun as I had hoped it would be. There are moments when my babies get on my nerves, above my nerves, around my nerves, on top of my nerves…  Teenagers think they know everything and talking to my son is sometimes like talking to a brick wall. Or, you ask a question and he mumbles under his breath or shakes his head and then wonders why I keep repeating the question.

I used to think it was a sign of weakness to admit that I need a break every now and then or that I just feel like I am at my wits end. I worry that my son isn’t getting enough attention with the time my daughter often requires. And I wonder if I am doing enough to get my daughter what she needs. Lately doctors feel she seems to be regressing, in spite of all of the interventions.

As I continue this journey called parenthood and interact with co-workers and friends on the same journey, I am learning that I am not alone when I feel like I just want the house to myself and I want everyone else who lives there (including the dog) to take a long time getting home so I can just bask in the peace and quiet. I am not crazy when I get excited about a day or two of respite when I go on vacation or a night out without my kids. It doesn’t make me a bad mother to admit that I need a break from my daughter, or to say that at times her behavior is still tough for me to take even though I know she has a disability. I have learned and am still learning to cut myself a break – that being a mom is wonderful even though it doesn’t always FEEL wonderful.

I hope all moms will cut themselves a little slack and remember that we have feelings too and there are times when those feelings get hurt, bruised, battered and broken. It doesn’t mean we love our kids any less, it just makes us human.

Day 3-6

May 3 – 5

So the last time I posted, things were somewhat quiet. How I wish that was still the case. The past few days have been rough. It started OK, she had a middle school dance that she attended with her dad. I am proud of my husband. After what happened a few weeks ago I wouldn’t be upset if he didn’t want to take her to appointments. When a dad is restraining a girl it can look a whole more menacing to people who may mean well when they alert authorities but they don’t know what is really going on.

She had a really good time at the dance and things went well. That was the highlight of the weekend. The rest was pretty rough. The next day I had a breakfast at church to attend. She went with me. It was hard to get her to stay put and do as I asked. Since I was on the committee organizing the breakfast, it was hard to try and keep up with her and do my part. That afternoon we went shopping. She has had a growth spurt and needed a few new dresses for church and new shoes.  Having her in a store is like shopping with a toddler that is almost 5 feet tall. It can wear you out. She is touching everything she sees, she wonders off, she doesn’t pay attention to where she is going, and on and on. We made it out without too many incidents, but I was exhausted.

By Sunday she was moody and cranky. It was hard to get her to cooperate to get dressed for church and as I have said before, brushing her teeth is like preparing for battle. She was so moody that I wasn’t quite sure we would make it to church. I tried talking to her, tried to discover the source of her mood, and then remembered – she doesn’t understand it herself and certainly wouldn’t be able to explain it to me.

Part way through the service she seemed to loosen up and I was relieved. By Monday morning though, the calm before the storm was done. When we got ready to leave for school I realized her shoes were still with my sister who had helped her get ready for me before her after school dance. Because my daughter is notorious for misplacing shoes, I always have a back up pair. But she refused to put them on. She wouldn’t sit down and put them on correctly. Instead, she went to her room and retrieved a pair that had to be a size-and-a-half too small. I tried helping her put the new shoes on, she fought to get away. Finally she was yelling and screaming and really saying things that were WAY disrespectful. I felt my calm and patience begin to fray. I called for reinforcements and my mom came to get her. She didn’t go to school Monday, she was just WAY too emotional for that. I was tired, at my wits end and I felt like a terrible person.

Why wasn’t I able to get the situation under control? I hated having to bother my mother and have her leave her house to come to mine so early in the morning but my husband had already left for work, I needed to get my son to school and most of all, I needed help.  Maybe I should have let her wear the shoes she had on at first even though they didn’t fit.  Maybe I should have not allowed her words and actions to get me off my game. But every now and then, you have to know when to just say I need help. Her mood wasn’t much better at therapy last night either, they are afraid she is regressing some and may not ever move much past the toddler stage in terms of social and emotional development (sigh). What in the world am I going to do?

Day 2

Day 2

May 2, 2013 –

Last night wasn’t too bad.  And this morning was laced with only a momentary complication or two.  So since all seems well at the moment I wanted to use this entry to just reflect. Tonight is our first visit to the doctor at the university since the incident with the police. I will be taking her tonight and I have to say I am a bit apprehensive. I don’t know quite what to expect.

There are times when my daughter can be so loving and cooperative then there are times… I think you get the picture. Sometimes I wish there was a way for me to see what is going on inside her brain, inside her body in those times when cooperation seems like it is beyond her. 

I try to remind myself in those moments, that whatever she is struggling with internally is beyond my comprehension and my job is simply to love and protect her.  But I would be lying if I said that isn’t sometimes difficult. While I know that there are many things she struggles with, I can’t allow her to believe that her actions don’t have consequences. That is a tough balance. When we punish her for taking things she shouldn’t, sneaking food or other things she was told she couldn’t have, or whatever else she has done, we run the risk of setting of an episode. I can’t allow that worry however, to stop me from being her mom in every way, and that means teaching her right from wrong, even when she has trouble listening and practicing what we’ve taught her.

Sometimes when I mention that she has lost a privilege (or the time she didn’t get to go to the school dance because she took $20 from my purse), people feel the need to remind me that she is after all, a special needs child. Um – duh.  While we all know that is true, and I know that socially and emotionally she is much younger than her 11 years, her disability can’t be the excuse for everything she does. Even a four-year-old understands the word “no.”

Hopefully I will one day be able to balance an understanding of when she honestly can’t help her behavior and when she is just choosing not to cooperate. It’s tough, but I am after all, her mother and I love her to pieces - so, I’ll keep working at it.

Day 1

May 1, 2013

I guess I have finally surrendered, although time will tell if that’s actually true. Many have told me that I have the makings of a great book. I don’t know about that. But I do know that if I don’t find a way to really address some of what I feel it may lead to not only my own detriment but hers as well.  
I am the mother of a mentally-ill child. As I type this she is currently 11. Lately her outbursts and mood swings have become much more difficult to manage and harder to cope with.  Recently something we had feared for some time finally happened - the police were called as my husband tried to keep her from running into the street.  All they saw was a man holding on to a child who obviously wanted to get away. This happened on the campus of the local university where she had an appt. with one of the specialist in the Dept. of Psychiatry. They blocked my husband’s car in, three police cars sirens blazing. Thank God the doctor was there to describe her outburst and fit of non-compliance. But it doesn’t take away the humiliation my husband had to endure, or the fact that some stranger with no idea of what was really going on, was allowed to make an anonymous phone call with wrong information and then leave the mess for my husband to try and explain.
I think the incident frightened her a bit and we had a little reprieve from her outbursts, but it didn’t last long.

By the weekend she was back to banging on car doors, yelling at the top of her lungs, threatening to hit us, running from us, refusing to comply with simply requests and the list goes on.
This past Sunday she went ballistic at the church. Often she leaves her fits of rage for home and we are left feeling as though many might think we are making this all up. But for whatever reason this past Sunday, she just could not keep it together. She yelled at my mother, blamed me for whatever she was feeling, and refused to get cleaned up (she had a wetting accident, more on that later).
It often makes leaving for school and work in the morning very difficult . This morning for example, she didn’t want me to help her brush her teeth. She clamped down on the toothbrush, refused to hold still, tried to get away.  Since she doesn’t brush well on her own and currently has braces (she has an intense overbite from sucking her lip), if I don’t help her, the teeth will decay. The dentist says she already has the early stages of it. If we can get her to brush better it won’t go any further, but of course, the important word in that sentence is IF. 

I am hoping that this journal won’t become just simply a place for me to vent (although I plan to do plenty of that), but I hope it will help me gain perspective and give me the chance to remember all the fun my daughter and I can sometimes have together. I hope it will remind me that no matter how tough the road sometimes seems she is still one of the most important people in my life and without her, things just wouldn’t seem right. 
Well, wish me luck.