Wednesday, November 24, 2010

Birthday Parties

     Kyle's Birthday is just over a couple of months away.  This is when I usually start planning the event.  For the past three years we have had Kyle's party at the pool in Springfield and invited his whole class.  He loves to swim and if you send invitations to school you have to invite everyone.  What else are you going to do in the middle of winter with the potential of 15 classmates showing up as well as friends and family?
     Kyle had fun last year.  Some friends from school came.  Our family and some of our friends and their children came as well.  Kyle spent the majority of his time not swimming.  He sat with my husband's best friend next to the pool and chatted with him.  Some of my family members thought that he should be swimming with his friends.  I evaluated the situation and brought it up with Kyle.  I explained that his friends had come to his party to spend time with him and that he should respect that and swim with them.  He really didn't want to and observing the pool it was clear that the kids were having fun and they didn't mind either.  I let it be.  He was happy that his friends came to his party, but I think it was too much for him to handle.
     So, what do I do this year?  I talked with Kyle about his party.  I asked him if he would prefer the pool party or if he would prefer to invite one friend and have a special day together.  He picked the one friend option.  He suggested taking a trip to the Montshire Museum, he loves that place.  I explained to him how great of an idea that was but that we go there all of the time and that maybe something even more special would be better.  I was thinking the planetarium.  He loves space.  I have always wanted to take the kids there, but I won't drive there because I am not familiar with that area.  Hopefully my parents are reading this blog and will agree to do the driving!
     The mother in me has many emotions regarding this decision.  One is that I am happy that Kyle is going to have fun for his Birthday and that he knows and wants what is best for him, but on the other hand I am deeply saddened that the traditional big Birthday party with all of his school friends isn't the best thing.  This is something that I need to get over, but difficult nonetheless.

Wednesday, November 17, 2010

Go Ahead, Assume...

     Okay...I get it.  My child can seem uncoordinated and clumsy.  Because of this people underestimate his capabilities.
     We take the kids swimming a lot.  We introduced swimming pools to our kids as soon as they were born.  They all took to the water like fish.  During the summer we swim at my Aunt's pool next door.  During the winter my Aunt has given us a membership to the pool and gym so that way the kids can swim all year and my husband can also work out at the gym.  Kyle generally likes to hang out in the deep end in this one corner right next to the side.  It is nine feet deep at that end, but he is a very competent swimmer.  We have been going to this place for a few years now and he has never had a problem being down that end before.  A couple of days ago was a different story.
     My husband was in the pool at the smaller end with the two little ones.  Kyle was down in his corner.  I had never seen this lifguard before.  She was very nice, but very cautious.  This didn't really bother me because her approach was very nice and very caring.  One of the times that she came up to me she expressed a concern about Kyle being in the deep end.  She asked me if he had taken the 'test' that you need to take in order to swim in the deep end.  Test?  What test?  I didn't know there was a test.  I told her that as far as I knew he hadn't but asked if she could test him.  She wasn't able to at that moment because the swim team was practicing and there were a lot of people in the pool.  She agreed to do it at a later time.
     Now I wouldn't have asked her to give him the test if I thought he wouldn't pass.  The test was to swim from the shallow end to the deep end and then tread water for a minute.
     Swim team practice ended and the pool was quiet.  I asked her if she could test him now.  Kyle was eager.  She said that she could.  She explained to Kyle about the test and made sure that he understood what he had to do.  He showed her that he understood by repeating what she said and showing her with his body movements.  You could tell she was concerned.  I just stood back and didn't say anything, Kyle passing the test would be words enough.
     Kyle proceeded to swim towards the deep end.  He wasn't struggling, he was doing fine.  The only thing that he was doing odd was that he kept twitching his head, which I am sure was his response to the water in his ears.  I have never seen him do this that much before.  The lifeguard asked me about it and also asked if he usually does that.  All I said was that sometimes somethings bother him and sometimes they don't and that he has a variety of sensory issues.  I was in the middle of questioning something in my mind at this point anyway.  To me it was weird that he has issues with the whistle and ball sounds from basketball, but the echo in the pool area and whistle from the coach of the swim team went unnoticed.
     He made it to the end and then tread water.  One minute was up and he was fine.  I wanted to ask the lifeguard if we could see if he could make five minutes...I knew he could but I didn't ask.  The victory was his at this point anyway.
     The lifeguard said to him that he passed and that she was going to set some restrictions even though he passed.  He wasn't to swim out into the middle of the deep area, he was to stay near the sides.  Come on, he just passed your 'test'.  I didn't say anything because he doesn't swim out there anyway.  He likes his corner.
     I like to consider myself a cautious parent, sometimes to the extreme sense, but sometimes to me people freak out way too much when it comes to swimming pools.  I agree that you never leave a child unattended in the pool, but if you freak out the second the child's head goes under water you are going to scare them and they aren't going to want to swim.  People are amazed at how well our little ones swim and jump in the water where it is above their heads and swim to the edge or to a parent.  It is because I have given them their space.  If they do for whatever reason sink to the bottom, there is a couple minute window there to get them out and everything will be fine.  As long as you are nearby everything is going to be fine.
     I gave Kyle a bean for passing the test.  He was so excited.  It shows you that just because it may appear that someone can't do something you should at least let them try.  You might just be amazed.

Friday, November 12, 2010


     I signed Kyle up for basketball yesterday.  I do my best to try and sign him up for a variety of things like sports, piano and gymnastics as well as other opportunities like Lego Club.  These all help in a variety of ways.  Some help with gross motor skills and some help with fine motor skills.  Some help with coordination and balance.  They all help with social skills and they are all fun activities.
     The only "different" issue that I had last year with basketball was that he didn't like the whistle being blown and when everyone would dribble their balls at the same time it bothered him.  It varied in severity from day to day, and on a sensitive day he would cover his ears more than the other days.  He really didn't have any meltdowns about this specifically, just the need to cover his ears.
     When I asked him about playing basketball this year the first thing that he had mentioned to me was that he didn't like the whistle being blown because it bothered his ears.  Then we talked about how much fun he had playing basketball.  He wanted to play, but the sensory overload from the sounds was driving him away.  As a parent I do not want him to miss out on these great oppotunities that he won't have once he grows up.  It is my job to find a way to make it work for him.  If I let him retreat and stay within his "comfort zone" then it will just get harder as he gets older.  I need to find a balance of keeping his comfort, finding ways to help minimize sensory stimuli and ways to help him grow and deal with some of them.
     So, what do I do in this situation?  I haven't figured that out yet.  I asked if they knew who the coach was going to be for Kyle's team yet and they didn't know.  On the sheet I had to fill out for Kyle to be on the team I wrote a comment on there about Kyle's Asperger's and that he was sensitive to the whistle and such when he played basketball last year.  I am hoping that he has the same coach as last year as he is familiar with Kyle.
     Now I am thinking through all of the different options to help Kyle cope with the sounds this year in basketball.  I have really thought about ear muffs or ear plugs.  I really don't think that this is a good idea as the other kids will most likely find this a good thing to make fun of.  I also have the concern that he won't be able to hear what the coach is saying, which is also just as important.  I could request that they don't use the whistle and just roll the balls around instead of bouncing them!!  Obviously I am just kidding about that one.  What is the answer?  Is there a good answer?  I haven't figured this one out and I welcome any thoughts and suggestions.

Tuesday, November 9, 2010

Structure and Limits

     Kyle was asleep by 6:30 last night.  This is very unusual and when this happens one needs to be prepared to be up with him at some horrific hour in the middle of the night when he wakes up and can't go back to sleep.  To our amazement he didn't wake up until this morning when he was woken up to get ready for school.  I don't recall him ever sleeping twelve hours in a row before.  So, what led up to Kyle falling asleep so early?  Well, the events that led up to that were frustrating. 
     All children (adults too), especially those on the spectrum, need structure and clear set limits.  They function better.  Without structure and rules there would be chaos.  Chaos contributes to sensory overload and meltdowns.  I try to maintain the structure and set appropriate limitis in Kyle's world, and for the most part it works.  Yesterday was one of those exceptions.
     Monday through Friday Kyle goes to school.  My husband drops him off in the morning on the way to work and I pick him up when he gets out at three.  He does his reading homework in the car on the way home, that helps him focus.  When we get home I send the two little ones to their room to play and Kyle and I stay in the living room area.  Kyle sits at the kitchen table and does his homework.  I monitor him to make sure he is doing his homework and help him if he has any questions.  Ninety-nine percent of this time is spent by me helping to keep him on task.  When he is focused it takes him less than three minutes to do his math homework.  He also knows the rules, no playing until homework is done.  He has come a long way being able to come home and being able to transition right away to homework.  Yesterday, not so much.
     His class is doing a unit on Native Americans.  He has to do a project on the Wampanoag.  I knew that he would need a lot of hand holding, and I was prepared for that, but I will not do it for him, and as stubborn as he is I am much more.  He has had this project for quite some time, it is due tomorrow.  I helped him by breaking the project down in smaller pieces.  I picked up a few books from the library.  I even took him to a presentation at the library on Native Americans and there is also one tonight that I am taking him to.  These presentations are geared towards children and are a lot of fun.  I even bought him the book that the author presented at the library and she signed it for him.  His project is almost done.  He only has to write a couple more sentences and then paste everything on his poster board.  He could have finished it yesterday in five minutes, but he absolutely refused.
     The first forty-five minutes after we got home from school was spent trying to get Kyle to do his homework.  He refused.  There isn't anyway I can force him to do it, but I can make sure that he was sorry he didn't.  Knowing that we still had Tuesday after school to finish it, I allowed him to go in his room.  This was under the condition of no TV, video games etcetera.  He had to be in his bed.  He rathered this than doing his homework. 
     I called for the little ones.  I told them they could come back out and play in the living room.  They had the TV on as well.  A couple minutes later Kyle comes out and tells me he is ready to do his homework.  This is great!!  I thought we were getting somewhere.  I explained to him that we could work on his homework, but that I wasn't going to send the little ones out of the room.  He had his chance, and it isn't fair to the little ones.  He kept telling them they needed to leave, refused to work on his homework and ended up back in his room.  He came out again.  He wouldn't focus, he wanted to come out so he could watch TV.  I tried helping him stay on task, and he got very frustrated with me.  I told him that he was going to get three strikes.  At the third strike he would lose his XBox 360.  He reached the third strike and I sent him to his room to retrieve his XBox 360.  He cried and had a meltdown.  He kept saying things to me like, "Now I get to take something of yours" and other stuff that I just blocked out.  Ignoring this behavior makes it stop because the child isn't getting a reaction.  Sometimes you get further by staying calm.  Reacting to this sort of stuff doesn't do anything but escalate the situation which isn't positive for anyone.  Back to his room again he was sent. 
     During this time I picked up his iPad and searched the app store.  I found a great tool, it is a bean jar.  You set up the jar, how many beans until a reward is given (I set it up for 10) and the reward.  After Kyle calmed down for awhile I called him out and explained to him this new approach.  He really liked the animated bean jar.  For his first reward he wanted to earn his XBox 360 back.  Fair enough.  We also have a rule that we do not take beans away.  This is just for positive behavior reinforcement, not for punishment.  Thinking this would work I found a new energy to push forward.  This didn't work.  He went back to his room and was asleep before I knew it. 
     The bean jar proved to work this morning with my husband.  He gave him a bean because he got up and ready for school this morning without any hassle!  He even had time to play on his iPad.  When it was time to leave my husband said to him, "Give me your iPad for a minute before we leave."  He opened up the bean jar app and gave him a bean explaining to him how great he was that morning.  Kyle was excited!  He earned his first bean!
     Although yesterday was one of those testing your limits and tolerance days, one can not expect everyday to go smooth.  Everyone is entitled to their days.  I wish I knew of some way that I could have made yesterday positive, but I also need to realize that sometimes things just don't work out the way that you would like.  Here is to a new day.

Sunday, November 7, 2010


     Like every other parent on this earth I want the best for my children.  Frequently I look to other parents or consult the professional world for advice when I am not one hundred percent sure.
     Medicating a child, especially at four, was not something that I ever dreamed of having to do.  But I was faced with that decision.  Kyle's "behavior" became apparent between the ages of two and three.  At three I mentioned to Kyle's pediatrician my concern, referring to these behaviors as "ADHD-like".  Basically he was off the wall, constantly running around in circles uncontainable.  His health and behaviors prior to toddlerhood were "normal" I assume.  He suffered from GERD for the first thirteen months of his life and had extreme colic.  Nights on end my mother and I would have to stand and rock him to keep him asleep.  As soon as he was set down, or even if you sat in a rocking chair, he would scream until you stood up and rocked him.  The car was another way to get him to sleep without crying.  I remember one time driving four hours round trip, not even stepping out off the car, just to get him to relax.  Anyway, back to Kyle's third year checkup.
     Milestones up to this point were always on target, rolling over, crawling, walking, talking etcetera.  He was ahead with things like his colors and shapes.  He knew all of them before he was two, including colors like gold and silver and shapes like ovals and octagons.  The only thing that was of concern to me at this point was his hyperactivity.  The pediatrician dismissed my concerns assuring me that everything was fine and that they don't look into things like ADHD until there are problems at school.  I am sure he also was figuring that this was my first child and that I was getting over concerned about normal childhood behaviors.  Yes, this was my first child and I wasn't sure, that is why I saught the advice from the pediatrician, but I was not the only one that was concerned about Kyle's behavior.
     Needless to say, things didn't improve by his four year checkup.  Things got worse.  This time I wouldn't leave the pediatrician's office without getting a referral. 
     In prior discussion with the pediatrician he expressed his beliefs that he didn't like medicating children for ADHD related conditions.  I agreed.  I would much rather be able to deal with the struggles with behavioral approaches and education.  Medication to me was a tool used to help minimize the symptoms of the "disorder" while trying to teach the child appropriate behaviors.  Looking back now, had I been more educated in ASD or had my other children first, there were many other behaviors that Kyle had that were not typical that should have sent a red flag flying for an ASD evaluation.  Too late, there isn't any way to go back in time.
     At four Kyle was diagnosed with moderate to severe ADHD and ODD.  Medication and behavioral therapy was the recommended treatment.  Finally, I felt like we had this under control.  We could get some things under control before Kyle went to school.  My biggest fear was that Kyle was going to go to school and have problems.  My biggest fear came true.
     At the follow-up appointment with the pediatrician he sat me down and told me that I needed to adjust to the fact that Kyle was going to need to be on medication for a very long time, maybe into adulthood as well.  After reading the psychologist's report and reviewing all of the tests the pediatrician realized that there was something going on beyond the normal realms of childhood.
     We went through every form of medication, nothing seemed to be the perfect fit.  Even with the Asperger's diagnosis the ADHD diagnosis is still there and needs to be worked with as well.  Again, we are going through all of the medication to try and find the "best fit" for Kyle.  Sometimes I feel as if he is being experimented on.  Sometimes, when I know something is not working the doctors want to try it a little longer just to see.  Well, most recently he has been on Adderall and Risperdal.  These haven't been working either.  Even after talking with his teacher the medication isn't working at school either.  Why take medication if there aren't any positive effects?  Risperdal as well carries some major side effects.
     So, temporarily or permanently, Kyle is off of all medications.  Maybe we will see a difference and realize that the medication was working or maybe we will find out that no medication is going to help.

Wednesday, November 3, 2010

"Shut Up"

     We were all sitting in the living room.  My husband was watching TV, the little ones were on the computer and Kyle was graphing things on his iPad.  Apparently Kyle had to listen to whatever was being said and was getting frustrated because he couldn't hear because of all of the noise around him.  This would drive anyone crazy.  My husband went to say something to him and out of Kyle's mouth came, "Shut up."  This wasn't said in disrespect but out of frustration due to sensory overload and not having the ability to think about what he was going to say and how it would make the other person feel.  Kyle was just trying to get his needs met.
     This upset my husband, and quite rightly so.  He sent him to his room for a time out.  Not wanting to intervene I chose to do so anyway.  I overrode the time out.  Not directly.  I had a discussion with Kyle as to what was going on and decided that the best solution was head phones.  I also made sure that he apologized to my husband and coached Kyle on the correct way to go about having certain needs met.  The meltdown fizzled very quickly.
     To some it may seem as if I am giving in to Kyle, but if you look at it and try to understand where he is coming from and what he is dealing with you would agree that I am not.  For instance, he is very sensitive to the sun.  He frequently wears sunglasses when the sun is really bright.  Is it easier for him and me to have him read in the car with his sunglasses on, or argue with him for ten minutes because I don't think he needs them?  (The car is where he does his reading homework.  That way it is done by the time we get home from school.)  Does it really matter if he wears sunglasses?  For me, however, the sun drives me through the roof but I can not stand wearing sunglasses.  I try every once in awhile, but soon realize how annoying they are.
     It has taking a lot of learning, patience and time (and I haven't mastered it yet) to be able to look at Kyle's behaviors and distinguish what is sensory overload, lack of understanding or just plain defiance.  My determination of his behavior is how I decide how to react.  Obviously if his actions are out of defiance or if he had prior understanding that his behavior was inappropriate then the reaction would be more severe.  If it is a sensory issue, then it is my duty as a parent to try and lessen the sensory overload.  If it is lack of understanding, then it is my job to use that time as a teaching moment.
     I have noticed that the more I try to understand Kyle's behaviors and help him appropriately, the less meltdowns he has and the better everything is overall.  Kyle's behaviors are never, or very rarely, intended to hurt someone or annoy them.  He just doesn't understand.  I am just glad that he is, for the most part, able to identify his sensory issues so that way I can help him be more comfortable.

Tuesday, November 2, 2010

Am I Meeting the Needs or Everyone Else in the Family?

     Having a child on the spectrum means that a lot of your time and resources are given to that child.  The job as a parent is to make sure that the needs of everyone are met.  Even if I had all of the money in the world and could buy everyone anything that they wanted or needed I still wouldn't be able to buy more time.      
     Luckily I am able to stay home with the two younger children who are not in school yet.  This time quickly fills up with story time at the library, going to playgroup, and the vast array of other exciting things that we do day to day.  So, for the most part I feel that I am able to meet their needs.  Except for days like this morning.
     Kyle got his iPad yesterday.  He was off the wall!  He was so excited to be able to use it.  First I had to download the apps and books for him to use.  Everything was going smoothly until one of the apps wouldn't download.  When I called Apple support, they were closed and I would have to wait until the morning to call.  I called first thing this morning, they weren't open yet.  They are located on the west coast.  I called the minute they were open, 9 o'clock our time, and still didn't have the issue resolved by 10:15.  This wouldn't be a problem, but I still needed to shower and get the kids down to story time for 10:30.  Luckily I was able to get the kiddos ready while I was talking to the support guy.  I didn't think we were going to make story time, but we did.  We were only five minutes late.  The guilt from missing the five minutes is still with me right now.
     The little ones are also dragged along to all (well, 99% of) Kyle's appointments.  During these times we (the little kiddos and I) are waiting in the waiting room reading books or playing with toys.  Yes, I get to play with them but I am sure that they could choose a million other things that they would rather be doing.
     Then there are the needs of my husband...I haven't checked in with him lately on what his needs are as I am so wrapped up in taking care of the kids and their needs...but I would hope that he would be able to use his "big words" if there was something that he needed or wanted.
     Then there are my needs.  Am I allowed to have needs?  I try my best to take care of myself, and I think I am doing okay, but there are areas that I would definitely like to improve.  I go to counseling every other week.  It is a place where I can go to vent.  Sadly it is mostly about the struggles that Kyle is facing and the impact it is having on him and everyone else, but at least it helps me keep my sanity.  I am hoping that when these stresses start to diminish that I will be able to start working on improving myself. 
     Well, it has been over a month since I have been to see my couselor.  I had an appointment last week, but I had to cancel because something came up last minute for the kids.  I was really looking forward to that appointment.  Luckily I was able to reschedule for tonight.  I am really looking forward to it.
     So, shortly after my husband comes home I will head to my appointment.  Taking care of one of my needs.  Before I can even get to the door I will hear two little ones crying because they will miss me and want to go with me.  This is hard for me.  It is hard because I will miss them too but we all need the space too.  They get to stay home with me all day while Daddy works.  They get to have Daddy time now.
     Many questions run through my head as to why they don't want me to leave.  Am I not devoting enough time and energy to them?  Is it because they have me all day?  What more can I do for them?
     I will never know whether what I am doing at any given moment is the right thing to do.  All I can do is use my best judgement at the time.  I would like to hope that I am taking care of the needs of everyone in the family and that the needs of the little ones aren't being pushed aside.  So, until I am no longer a parent, which I always will be, I will keep doing my best and doing what I believe is right for everyone.