Grieving

Hi, all!  I'm LeMira, and Natalie asked me to contribute to this blog.  So, here is my first post, and you'll get to know more about me and my son as I write more.  

Last night I had a talk with a friend who teaches children with special needs at a school just for them.  When I learned this, I opened up about my concerns with my six year old son, Jackson.  You see, I am getting him tested for PDD-NOS in the next two months.  In our conversation last night, my friend Janet mentioned that it's okay to grieve over what you you thought you were going to have but aren't.  (Does that make sense?)  So many times we associate grief with death or a loss that we could touch, but grief goes deeper.    Grief is natural.  Grief is okay.  Grief is necessary.

Grief is natural.  Grief comes with any loss, even if it's the loss of that dream you had, that vision of having children with no special health care needs.  Most moms had a time in their lives when they were little girls and dreamed of being a mommy.  We held our dolls, sang to them, fed them, and changed their diapers.  We played "House" with our siblings and friends - taking turns being the parents and the kids.  When we were pregnant, we talked about the dreams we had for our kids.  We thought about that first day of school, and what their lives would be like. We had dreams and visions.  Those dreams and visions have had to change.  Perhaps they can still be, but we will get there via a different path than we had planned, and it hurts.  It's normal.  We grieve over the other path, the one less rocky (yeah, that one that you see cleeeeeeaaar over there).

Grief is okay.  Don't beat yourself up for missing that other path.  It doesn't mean that you don't love your kids.  It doesn't mean that you aren't grateful for the blessings in your life.  It doesn't mean that you would change it, but sometimes it just hurts.

Grief is necessary.  The only way to move ahead on this path is to grieve over the path you didn't get first.  Let it run its course - shock & denial, guilt&pain, anger & bargaining, depression/reflection/loneliness, the upward turn, reconstruction and working through, acceptance and hope (see this link for more information).  Where are you in your stage of grief right now?  Think about it.  When you first knew that something would be different with your child, how did you feel?

Did you deny it?  (I was in denial for much longer than I care to admit.)
Did you blame yourself (guilt/pain)?
Were you angry at the therapist or school teacher who informed you, or did you tell yourself that you could change it if you just did such and such (anger/bargaining)?
Did you fall into depression because you didn't know what to do; did you feel alone, like no one understands or that it's you alone bearing this burden?
Did you find resources to help you?
Are you learning to work through it all?
Have you accepted it?


There is no timeline in grief.  It is different for everyone, and it's possible to move through the stages at different rates, in a different order, and repetitively. I can tell you that I've gone through several stages multiple times.  For example, I've accepted some things, but I'm still depressed about others.   I personally believe that if you don't allow yourself to grieve, and you skip right to acceptance or  you get stuck in denial, you will eventually get stuck in depression, and you could possibly go wacko. Tell yourself that your feelings are normal and natural.  Then, you will move on when you are ready and start rebuilding your life for the way it can be, not the way you thought it was going to be.

Not Otherwise Specified...... and that means?

In the last year since both of our boys were diagnosed with PDD-NOS we have tried to figure out exactly what that is. What does it mean when your child carries the label Not Otherwise Specified? Well I have come to find out that the professionals are just as baffled as we are. In short what I can tell you is that my two boys share many irregularities similar to Autism but not all, really not most. I have often wondered if it wouldn't have been easier if their disability had been more severe. Then I realize how ridiculous that sounds and ask whether MY brain has malfunctioned. Of course it wouldn't be better if they were more severe. Granted it would have been more obvious to me and all those around me that something more was going on. It may have caused the ball to get rolling sooner with testing and intervention. But my children's futures are promising when so many children with more severe diagnosis will have a much harder time.

So there is a point in here. Today a sweet lady came up to talk to me about Micah. He was sitting in the women's auxiliary class at our church with me because he just couldn't handle the children's class today. We talked about how she used to work as an aid for children with Autism and Aspergers. She commented that it must be so great to have such a high functioning child. I agreed it was great that they functioned so well. She said that if you didn't know some of the peculiarities of the diagnosis you would not know that Micah had anything wrong with him. I just sadly smiled and said "And there is the root of all of my problems." As a parent where both my children are "abnormal" I didn't know the difference. All the parenting advice I was given strictly forbade comparing my child with another. "Every child is individual and learns and grows at their own pace. Give them time and everything will be fine." That's a good rule in general but in the case of Special needs..... not so good.  You keep waiting for your child to catch up and then there is a huge gap because you waited too long. It is hard to have a child on the edge of normalcy. While people watch my children I see them tilt their heads and squint going "Wait, did he just do that?" or "hmm something's a little odd about that one." You never know what to expect from them. Some days they function great, practically perfect. The next it is total meltdown and regression. I spend most of my time explaining behavior to people we come in contact with. Most of the time during the day I am disciplining and I find it hard to recall praising the boys at all. Then I read books that tell me my child thinks differently and I feel guilt over my expectations and punishments when he JUST DOESN'T GET IT! (or does he?)

As my family and I travel down this road together I just hope that forgiveness abounds. I honestly don't know what I am doing. But I am doing something and that is going to have to be enough. So yes I am thrilled that my children are so high functioning. I feel blessed everyday.......... after I eat chocolate and take 5 Ibuprofen.

Expectations

I have been thinking a lot about what my expectations should be for my children's lives. Many of the books that I have read about children with disabilities have cautioned against too high expectations which can lead to regression in a lot of those children. As a parent it is hard to know how high is too high. Here is what I do know.
            - I will not let my children use their disability as an excuse. Yes it is a limitation but don't we all have those. I struggle with math but my father wouldn't let me take the easy way out. I spent more time than others on homework, studied more for tests and was darn proud of the 81 that I got on the test. It wasn't an A but it was the best that I could do. That is what I expect of my children.

          - I will not let them forget they are valued. Their contributions are just as meaningful as someone who does not have a disability. Just because not everyone understands how they think doesn't mean that what they think isn't important. I expect them to share their ideas and their feelings because they are important.

         - I expect them to accomplish great things. I will not specify what those things are, they get to choose. But whatever they choose I know they will do their best. In the end it's enough.

So later when I feel a hint of disappointment when my child is not keeping up with the others around them I have a checklist to go through. Is my child using his disability as an excuse? No, check. Does my child feel valued? Yes, Check. Is he accomplishing great things? Always, Check.

Expectations met!

Don't take your bad parenting skills out on my child!

As mothers of children with or without special needs I am sure you have been in a similar situation. That is why I am posting this rant, I think you will understand. The nature of my children's disability is such that social interactions are incredibly hard. This is most of the reason I don't take my children in public very often. Today I decided to take the boys to a little water fountain park that we found last week in the middle of a small state park in the town right next to us. I wanted to let my husband have a little alone time and it was very hot so I thought the boys would like the water. We had a pretty good time when we first arrived there. There weren't too many kids and the boys and found some friends to play with. It happened so fast I hardly knew what happened. All of a sudden I heard this woman yelling, "GET OUT OF HER FACE FOR GOD'S SAKE!!" I turned to look and there was Micah hunched over smiling very very close to the little girl he had been playing with's face. I turned to find the Mother who was yelling while I made my way over to Micah. She of course was just sitting on a bench 5 ft. away from the situation yelling. Another woman of the same party came over and picked up the little girl and I made it over there and asked what had happened. She was very kind and said, " oh nothing, he was just a little close and she was a little uncomfortable." I explained that he has a hard time understanding personal boundaries and she smiled and said it was all right.

So here are my gripes. I am sure you can guess the first. That woman had no right to yell at my child the way she did. I don't like confrontation but I was very close to walking over to her and decking her. As a parent you are setting an example for your child and yelling should not be one of them. He was just trying to get her attention, granted inappropriately but first of all walk over there yourself and see what the problem is. Maybe it has been the experience with my children but the first thing I do when I see a problem is get myself over there and figure out what is going on. He wasn't hurting her, show a little maturity and act like the adult, not the child throwing the fit.


Second, I am so tired of always needing to hover. I am constantly on alert when my children are near other children. It is like I am not only watching my children but the children that are in the general vicinity to my children. It is exhausting! I am constantly having to facilitate almost every interaction to make sure that my children don't do anything inappropriate that will then cause them to lose their friends. I am always there to make sure that other parents don't get upset. I am always there to explain why my child does whatever peculiar thing he does. I am so tired, everyday I am ready to quit! But guess what I can't, and I won't because every new social interaction my children have they learn. Slower than other children but I am seeing progress. In the end progress is worth it and I will keep doing it because my children are worth it.

Just something from my brain to yours

Sometimes it is hard to watch other peoples kids. You have your usual reasons, but for me it can become depressing. Many of my friends have been writing about their journey with Adoption and I thought that maybe I should write a little something about my journey with my Special Needs children. I have occasionally commented on things here but I thought it would be nice to explain the emotions and reality of dealing with two children with Autism.  Never did I think I would be a mother of a special needs child let alone two. The day Micah started showing signs, I broke down and wept. God got an earful that day. It is hard to watch your child struggle at things his classmates and children younger than him easily master. When being updated by friends and family about their children I have to mute that voice in my head that tells me to be jealous. I try to be happy for the accomplishments of other's children. Their success in no way demeans my child's. When I struggle to not feel like a failure as a parent I have to stop and really think about my children.

Quite frankly they are amazing. As my dear friend puts it. They live with a different view of the world. They think differently, feel differently but are forced to conform to the standards that are set by society. It would be like putting on someone else's prescription glasses and then being asked to do ordinary tasks. And they try, and keep trying. We keep asking them to do these monumental things and they don't quit until they finally get it right. It may take them longer, it might not be perfect but their victory is all the more sweet. So in the end I don't begrudge parents their extreme pride in their children's accomplishments. I am right there with you, I just have something different to be proud about and it's ok.

Diagnosis... Kind of

It is one of the hardest days of your life when someone tells you your child has problems. That your child is not "Normal". But I can honestly tell you that the harder thing is when your child is refused the treatment they need. We took Isaac and Micah to an outpatient OT clinic that specializes in Sensory Processing Disorder cases. I was so excited to get to have this direct service for my children. They saw both children individually and turns out Micah is just mimicking Isaac's behaviors, he doesn't have SPD. Talk about huge relief. Someone could actually tell me with confidence that my second child doesn't suffer the same thing as my oldest child. The tears came in the car while Micah told mommy, "don't be sad". The OT explained that while Isaac does have many symptoms of SPD he has many positive factors helping him out. His intelligence and work ethic being two of many. She felt positive that with treatment he can live a happy and succesful life. (notice I didn't say normal? I hate that word!)

Ok here is the catch. Because SPD is not a medically authorized diagnosis as of yet the treatment for it is called habilitation not rehabilitation. Most Health insurance will not pay for any of these treatments. Lucky our health insurance pays for 8 visits. This therapy is only useful if it is routine, once a week. So we can't stretch this out or be satisfied with just 2 months. His condition is not going to go away in 2 months, it's not going to go away ever. And here is the problem with Health insurance and the Government. They are more concerned with cleaning up the messes they made by not spending the money on the premptive services than on fixing the problem before it becomes huge and unwieldy. I pay lots of money for Health Insurance a year, my husbands company pays lots of money as well. This should be a non-issue, we pay, they pay. These therapy sessions cost $125 an hour. That's between 500 and 600 dollars a month. Do you have that kind of money? I sure don't. But that is what it takes to get the help my son needs. So what does a mother do? Do I take the 2 months and say thank you for trying but we can't afford to help our son be successful anymore? Do I try to find the money somewhere? Do I hope that what I am trying to do at home will be enough?

There are plenty of other mother's out there with the same dilehma as I have. And in this case one mother I know has a worse situation than I could ever imagine. I am putting her post HERE because even if my situation is much less horrifying I understand the useless feeling she descibes and honestly it needs to be stopped. We need to have options to help our children succeed and be safe. What use are we if we can't accomplish that?

Emotional Sunday

For a child with Sensory Processing Disorder social situations can be tough. This was brought home once again for me on Sunday. Isaac has been struggling with going to primary at Church. He has a hard time sitting and concentrating on what is going on. He has become attached to a little boy in the class just above him. This little boy also likes Thomas the tank engine and brings a bag full of Thomas books and coloring pages. Yesterday this boy decided that he didn't want Isaac to sit next to him because Isaac kept bothering him. I quietly stood to the side and watched the interaction. The little boy was trying to tell Isaac kindly that he wanted to sit by someone else today because he didn't want Isaac to get into his bag. Immediately the two boys sitting next to this little boy started telling Isaac that he didn't get to sit by his friend all the time and that he wasn't even in their class and shouldn't be sitting by them anyways. I watched to see how Isaac handled this and was surprised when he turned to the little boy and promised he wouldn't get into his bag if he could sit next to him. This was big for Isaac. He comprehended what that little boy was telling him and tried to problem solve the situation. The situation unfortunately wasn't solved because one of the boys sitting next to Isaac's friend started yelling at Isaac that he needed to leave them alone and go back to his class. Isaac collapsed to the floor and started to cry and say "I'm not taking this anymore" his normal frustrated dialogue. At this point the boy started pushing Isaac with his shoe to get him to go away and move. I had had enough. I tried to calmly tell the boy that pushing people with their shoes was inappropriate and that he needn't yell at Isaac so meanly. The boys father was sitting right behind him as this was all going on. So now to the point. I know that it is hard to understand my child or even to put up with his abnormal behavior. The little friend that didn't want Isaac to sit by him had every right to ask to sit by someone else. Unfortunately for Isaac he doesn't understand this. He doesn't know why kids don't want to be around or do things with him. It is enough to break a mothers heart. To watch it over and over again is painful. The hard part is being able to educate everyone he comes in contact with about what is going on. It is also frustrating when parents don't step in when other children are not patient enough with him. But again how can I expect people to understand when I don't fully understand myself what is going on?