Wednesday, July 27, 2011

Challenging Success

Lately, I have been working very hard with Alyssa, to help her, become successful, with her bathroom experiences.  Let me tell you, she is successful sometimes, meaning she can go to the bathroom, but the challenge here….. She has difficulty communicating, to us, her need to go.

I think sometimes when people see an older child needing pull-ups, their natural skepticism, may kick into gear.  I can only imagine all the things others must think.  I do my best, to offer Alyssa, the most respect around this issue.  She is not in pull-ups because of anything, other than, her inability to express her wants and needs.  It’s a complex process for her to match feelings, emotions, desires and needs with the words to make it happen.  You can see her wheels turning, she’s always thinking, but sometimes it takes a long time for her to say the words, or she won’t say them at all.  I don’t want to cause frustration for her, but this is something I feel is very important for her, and for us.  We must persevere and press forward with this training.  It’s one of the hardest things we are dealing with.  I am not worried what others may think!!  I know, this is a necessity for Alyssa, to be able to be independent, in this area. 

I have a schedule I am trying to follow.  I set my alarm each night and wake up my sweet angel and take her to the bathroom.  We are successful, almost every time.  Then, I re-set my alarm for a few hours later and go again.  We have a great deal of success, most of the time, during the night.  Then, we go into the daytime hours.  Daytime is more challenging because there are so many more distractions.  Alyssa is successful often, but not as often as, I would hope for. 

Through all of this, I find myself caught between two dilemmas.  One, I am exhausted.  Second, I wonder how to get the language to coincide with the experience.  Just the other day, I took her into the bathroom and I said, “It’s time to go to the bathroom”.  She looked up at me, with sheer frustration, and she said, “It’s time to go to the bathroom, I can’t go!!”  WOW!!  I was very impressed with her language, but it came out of that frustration.  How can I get her to say, “I need to go”, at the other times, the natural times, when there isn’t frustration driving the language? 

There is also a part of me that wonders if I am doing the right thing.  I feel terrible waking her up every night, disturbing her beautiful and peaceful sleep.  But then, I find myself thinking, I have to do this, so she can get the message, it’s not optional.  If I create a pattern and enough successful experiences, maybe this will all come together? 

I hope by sharing this, I can shed a bit of light, on what some of our experiences are like.  I wish I could say how easy all of this is, but it’s not.  And, we are trying so hard.  When we fail, it may mean an entire day of laundry, which only adds to the exhaustion.  Yet, when we succeed, we are excited and accomplished.  It’s an emotional roller coaster, for sure! 

Friends have shared their view on rewarding strategies.  I haven’t been quite successful with this because I don’t know how to communicate the reward concept.  What do I say?  “Good job, here’s a lollipop.”  We don’t give Alyssa sugar because it turns her system inside out and makes her cranky.  “Good job, we’ll go to the store and get you a present.”  She doesn’t like going to the store.  Instead, I just say, “I am so proud of you” and I am!!!  Is that enough reinforcement?  I don’t know, but if anything, at the beginning of the day, or the end of it, I just want her to know, I am proud.  I am proud to be her mom, and this whole bathroom thing, is just another “thing”.  I do pray, she will become successful, in due time.  It’s the hard stuff that makes us stronger, right?  HA!  I can only be honest and say, I sometimes feel weaker. 

I appreciate you, my readers.  Thanks for being a part of our journey.  Have a great week!!  Angie

Wednesday, July 20, 2011

Summer Fun

A couple of weeks ago, Alyssa was supposed to attend a special rafting trip, through the school.  Unfortunately, we hit a bump in the road and Alyssa did not get to go.  We’ve probably all heard or used the expression, “When life gives you lemons, make lemonade”, right?  Sometimes life can offer the sweetest things, we just have to find a way to reveal them.

When I found out Alyssa wouldn’t be able to go on the rafting trip, I almost immediately decided, I would see about taking Alyssa and her friends on a private rafting excursion.  Oh for the love of lemonade!  That same day, I got a call from a friend, who called to check in on how our summer was going.  I shared with her; we were unable to attend the river trip and I was thinking of inviting Alyssa’s friends and setting something up through one of the local companies.  She said, her and her husband had a raft and would love to take Alyssa and her friends out on the river. 

You have no idea how excited I was!  I jumped on the phone and the computer and started making invitations.  We had room for up to five children, including Alyssa.  The available spots filled up FAST!  Within about an hour, we were all set up and on our way to a very special day on the river.  The beauty in this opportunity, we were able to invite a few of Alyssa’s closest friends.  I am honored to know these children and their families.  I am delighted, we were able to do something special for these kiddos because they are so nice to my angel and they deserve some summer fun!

I have posted a few pictures.  Truly heart warming!  I am thankful for this experience, the people who helped make it happen, the kids for participating, the parents for being so awesome and to the school for the original bump in the road.  This happened to work out, even better than originally planned, because Alyssa got to share this experience, with a few of her friends, who she adores!

Ample sugar for the perfect lemonade!

Thank you for reading.  Have a great day!  Angie

Wednesday, July 13, 2011

Blind Sight

My sharing is intended to bring you into the experience, our experience, with all factors.  This includes the medical treatments, therapy, social life, educational aspects, etc.  Last week, I shared some of the harder stuff we have dealt with.  It is very important for you to know…. the hard stuff is directly related to what has brought us to the good stuff!!  And, there is more good stuff and success to come!!

For years, I have been a person who likes to “wear the blinders”, so to speak.  In my younger years, the blinders protected me, by allowing me to ignore and/or avoid certain situations.  This can really get a person into trouble.  Escaping reality doesn’t help a person deal with life and its issues.  When you have a child with Autism, you have to be aware, at all times, and looking in every direction!  It’s almost like being on a freeway with no median.  You need to develop the peripheral vision, long distance vision and be able to see what is happening right in front of you and side to side.  I am quite blessed to have my friend Sue, who for years, has peeled off my blinders, from the second she took sight of them, as I tried to put them on.  Who knew, her years of peeling away the blinders, were actually years of preparing me for today?  I didn’t used to like taking on the issues head on, but now prefer it.  The alternative, when not dealing with things appropriately, always seems to mean, someone is going to sacrifice.  If I allow it, Alyssa would be the one to make the sacrifices!  As you know, I cannot allow that, now or ever!        

At times, it is easier to put the blinders on, than to deal with certain things.  Dealing with the truth or reality can sometimes be extremely difficult and painful.  When I share the harder side of our life with Alyssa, my intention is nothing more, than to bring honesty in front of my readers, so they too can understand what it is like to have a child with special needs, bringing the blindness to sight.  Last week, many people sent me personal emails, Facebook messages and wrote on the blog too.  I greatly appreciate your participation and feedback.  Thank you!  You give me strength!

I intend to continue to share all sides of our experience and I invite you to continue to participate and share this with others.  Together, I hope we can all learn from one another and give Alyssa faith, hope, trust, love, encouragement and all the other things she will need to confidently succeed.  I enjoy including stories about experiences we have had.  Alyssa is so much fun.  She smiles constantly.  She is genuinely happy.  We all impact her.  I hope you will join me, encouraging Alyssa, and placing yourself, on the side of impacting her, positively!!!

Thank you for reading and have a great week!  Angie

Wednesday, July 6, 2011

Inconvenient Truth

During a meeting last year at school, it was revealed to me, certain professionals in the school system were “forewarned” about our family.  We were labeled, “adversary”.  Since Alyssa began preschool, it was apparent to us, if we wanted Alyssa to be included in a general education setting, with her age appropriate peers, at her home school, it was going take a great deal of effort on our part.  In the community we live in, children who have significant needs are often placed in a class, separate from the general education group.  The children who have lesser needs are given more opportunities to be amongst the typical children.  Just so you know, the law is written to say, all kids, regardless of race, ability, etc., should have the same educational opportunity, as each other, within their public school. 

It was proposed to us, early on, Alyssa would be placed in the class, away from the typical kids, amongst other children who have special needs.  She would be able to participate with the general education kids in specials, like music, art and physical education.  We had to say no to this offer.  Wouldn’t it be convenient, if we, the parents, would have agreed to this?  We didn’t agree to this because the research clearly indicates, children with special needs, who are included with their fellow peers, do better academically and socially, on a long term basis.  Looking out for Alyssa’s best interest was, and is, our number one priority.  I have always objected to being called adversary, but I am starting to think….. it’s okay.  Call me what you will.  It really is okay!  I am proud to be Alyssa’s mom and making a difference for her will hopefully make her proud of me some day. 

Countless times, when I have been chatting with other mom’s who have typically developing children, it will come up in conversation, how our family must advocate for Alyssa, in order for her to be able to get what she “gets” at school.  My mom friends always seem astonished and will ask “why don’t children with special needs get what they need automatically?”  I ask the same question, but I don’t have the answer.  I have heard, there are some schools that are mainstreaming children, as a regular practice.  The truth, others aren’t.  Some are dunking their toes in the water, but hesitate on jumping in the pool. 

It’s very difficult for me because I just want what is best for Alyssa.  I don’t want others to try to convince me what they think might be best for her.  The tug of war should not exist, but it does.  The tug of war looks like adults at each end of the rope and the child in the middle.  In our experience, parents must pull hard, very hard, in order for the school to honor a family’s wishes, for their child to be included, with the typical kids, throughout the day and not just for specials. 

The part of all of this that really gets to me is how hard it is, overall, to have a child with Autism, in the first place.  We have sacrificed everything (and will continue to) in order to try to make differences for Alyssa.  We have spent more than we can afford on medical.  We’ve spent hours and hours on insurance declines.  My husband works very hard, yet I have difficulty drawing an income, while handling the day to day challenges.  We put ourselves out there, for Alyssa, with no regret, but plenty of sacrifice.  Why, oh why, can’t the education part of this be easier to work with?  Why are we called adversary because we want what is best for our daughter?  And, last, why is it, what appears to be right, and maybe best for the kids, is not automatic?  Somehow, I feel like being an adult isn’t so cool, after all… Especially, if it is us adults making these decisions for children without a voice!  I would be ashamed of myself, if I didn’t become adversary enough to give Alyssa her chance at the full educational experience! 

Writing about all of this makes me feel nauseous.  I realize, Alyssa is only coming into second grade and we will be challenged to continue advocating for her needs for many more years to come.  Maybe my tears are just me feeling sorry for myself or maybe they come from how hard it’s already been and knowing there is more hard, yet to come.  From the beginning of this blog writing, I told you I wanted you to be able to see all the wonderful things about Alyssa, but how can I do that if I don’t share the other part, the inconvenient truths, that are a part of our journey.   This is also an opportunity to reveal two sides to a coin.  There is the side we advocate from, and the other side, where she is succeeding!

Thank you for being a part of this journey, reading and sharing this blog with others.  Have a great week.  Angie

One more thing......  All my thanks to those who believe in Alyssa and have elected to help us pull the rope!  Friends, family, therapists, doctors, teachers, administration, parents, children and all those who are part of this journey, pulling, hoping and praying for us and Alyssa, we can't thank you enough.  Hugs!  Angie