Social Skills

Some people are born with an innate sense of social awareness. I have always thought of myself as a people person. I tend to get along with most people and generally like most people. Social situations don't usually scare me, I just go with the flow. So when your child, who shares your genetic make up, has trouble in social situations, it is sometimes hard to understand how they could just not get it.

Most of us are born with the ability to adapt to social situations naturally. For instance, A little boy (Bobby) wants to play with another little boy's (Johnny) toy. The first time, Bobby goes up and takes the toy. Johnny then shoves Bobby and takes the toy back. "Hmm", Bobby thinks, "that didn't work". So he adapts and tries something different. He may not get it right the second or maybe even the third time, but he finally figures out that if he asks or waits his turn then (usually) he will get what he wanted: the toy to play with. This is a social script.

Children with Autism Spectrum Disorder (ASD) have trouble with these social scripts. Since every child is different, the breakdown comes in multiple different places. For my child, it is the deviation from his plan. He thinks he has a solid plan, so why isn't it working? He tries it again and again. His results are always the same, but he still doesn't change his actions unless there is extreme intervention by teaching him the correct social scripts that will give him his desired result. Is this making sense? So something that another child figures out with trial and error, my child needs direct supervision and extreme support to learn. He gets it eventually, and he excels at that specific situation once he figures it out.  But, oh dear, here is another situation that is a little different, and we are back to the same sequence all over again. He won't be able to carry over what he learned from the last situation, or if he does, it won't be appropriate to the new situation.

So if we use the same example, Isaac sees a little boy playing with a toy. He wants to play with the toy, but this time he also wants to play with the boy. So he goes to the boy and asks to play with the toy. The boy either says "no" or says "sure" and then walks away. Well, now Isaac is frustrated because he didn't really get what he wanted. So, I have to specifically say, "Did you ask to play WITH the boy?" He couldn't adapt to the change in the situation.

 The interesting thing about this process is that every parent goes through this. We have to teach our children these social skills. The unique thing about children with ASD is that Parents have to continue to do this for a much longer period and repetitively. Something a three and four year old should be learning to master, my son still struggles with at six.You could maybe see how this could become tiring for me, teachers, and for Isaac.

As a parent you hope that as you raise your children, that others will understand that it is a learning process for the child and for you as well. I went to the playground for a play date with one of Isaac's classmates from his PDD classroom, and unfortunately, the little girl had a classic "Autism" meltdown. (If you have not seen one of these count yourself lucky, they are intense.) The little girl wanted to swing on a specific swing, and another child was currently using it. She could not change her plan to swing on another unoccupied swing or wait patiently till the other child was off. So she began kicking wood chips at the other child, stomping, screaming, and then eventually hitting her mother when she tried to intervene. She could not be reasoned with, and the tantrum escalated. If you have tried to wrestle an out-of-control six year old you will know how hard it was for this mother.

This sweet mother was, of course, horrified and embarrassed, and it was really interesting for me to watch this as a bystander. Usually I am the mother taking a screaming and kicking child to the car as quickly as possible. The interesting thing was to see how the people around us reacted to such an abnormal meltdown. Most mothers looked on with sympathy and tried to ignore it so this mother wouldn't be embarrassed, but a few looked on horrified or disgustedly. At first I had a desire to say something to these few about how they had no right to judge, but then I thought it's too bad for them that they will never know this sweet mother who is so strong in her fight for her child.

I have become a better person from getting to know other mothers who struggle with their children whether they have special needs or not. Thank you to all of you who have supported and sometimes held me up when I thought I couldn't do it anymore. That, to me, is a social skill that only wisdom and experience can give a person. I hope someday I will have both, and use them to help others.

On a side note, today at the playground Isaac went to someone and asked him what his name was, how old he was, and generally went about the introduction ritual without a flaw! You should have seen my puffed chest and proud face. We've come a long way baby!

Professionals' Opinions

I found some great videos (on an adoption support site of all places) from a conference that was held last year with a panel of professionals who speak on autism (and mention very little ADHD/ADD).  They were beneficial and educational to me as a parent. Maybe they will help you.

http://www.youtube.com/watch?v=-wbS5e9P81M
http://www.youtube.com/user/VistaDelMarCares#p/u/3/opxpnu8t3OQ
http://www.youtube.com/user/VistaDelMarCares#p/u/4/TuQqvSgznyA


My favorite quote:  "Once you've seen one child with autism, you've seen one child with autism."  ~ A parent of a child with autism

School is Almost in Session

 Last spring, as the end of school approached, I started to dread the summer. For a while, I counted down the days until school.  Until today, I thought I was the only one in my household doing that. 

The first week of July, I noticed that Jackson started getting very clingy.  He watched everywhere I went, asked at least three times if I was going to "wait right there," and panicked if I left the room.  This past Sunday as we were getting ready to go to church, he said to me, "Mom, you can't leave Primary [the children's class]."  I worried and worried about him.  Separation Anxiety at six years old?  What was going on?

Yesterday I took him to his new school to meet his teacher.  As we climbed into the car, in a timid voice, Jackson stated, "Mom we have 1-2-3-4-5-6-7-8-9-10-11 days until school.  I don't want to go to school."  It hit me then.  How could I have missed this? How could I think my child, the one who remembers dates like I remember how many cookies are left, had forgotten about school?  His anxiety about the new school year has been going on since the last day of school in May.  He has been worried all summer long.

Suddenly, I'm panicking inside, too.  Last year Jackson attended Transitional Kindergarten (also known as Special Kindergarten) - basically Kindergarten at a slower pace.  He excelled there.  This year I chose to keep him in Kindergarten because of his social skills - or lack thereof.  I debated and debated about where to send him to school, and I finally decided on a local charter school.  Fewer students=smaller class sizes, right?  I found out there are 30 students registered in his Kindergarten class.  30, really? In a Kindergarten class?  Yeah, Panic Attack.  The school is trying to recruit more students to hire another teacher or encourage some to go to the 3-day class.  Jackson needs and is ready for the 5 day/all day Kindergarten.

Over the last few days, I've been fretting and fretting about how he will handle school.  Will he be so lost that he hates it everyday?  Will he be brave enough to ask what he doesn't know?  Will he use the bathroom or have accidents (he has an irrational fear of new toilets)? How many tears will he cry? Will he learn to make friends, or will they shun him?  What will he do without me?

There, I said it.  I think he needs me.  I can't let go.  I want to let go, but can't.  How do I do this?  Jackson needs advanced warning.   School registration was chaotic with parents and kids noisily chatting in small, crowded spaces; and so he didn't get a clear idea of the school.  I have a few ideas.

1. I'm going to call the school next week after it's started for the other grades and ask to take him around the school to see everything.
2. Go to the bathroom and flush the toilet; let him practice going by himself.
3. Teach him what he needs to do if he has to go to the bathroom, get a drink, etc.
4. Remind him to take deep breaths when he's frustrated and perhaps teach him to squeeze the table or his feet if he is frustrated (usually he squeezes my hand hard to get the deep sensory stimulation that he needs).  
5. Tell him that I love him and that he will be okay, and that it will be fun!

 I could use all the advice you've got.  What do you suggest?

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.