To Sum It Up...

"Grown-ups never understand anything by themselves, and it is exhausting for children to have to provide explanations over and over again"--Antoine de Saint-Exupéry

The Little Student

All has been going well at home without having support, but that will be changing soon.  We have been advised that we will need to have home hours going forward so we don't risk losing home hours :(...let the chaos begin, again.  I just have to keep thinking that we are doing what is best for Ryan, not us. 

I got to help out in Ryan's classroom last week.  It was so cute!  When I walked into the school, I saw Ryan walking down the hallway by himself.  I went up to him and gave him a hug and asked what he was doing.  He told me he was going to get his lunch ticket.  I was pleasantly suprised as I tagged along seeing him do something so normal, all by himself.  It gave me an imense feeling of calm.  I watched him in the classroom and he did great.  He was not clingy as I suspected, just a little student.  I was so proud.  It was really wonderful to see him in action and to be doing so well.  I had a smile on my face from ear to ear.

Uplifting news...

I got a call from our BSC last evening.  She told me that Ryan is doing great in school!  She said she expects Ryan to be without a TSS by the end of the year!  This is such good news and I am so pleased.  All of our hard work is paying off.

I can breathe...

So two weeks ago, we decided to take a break from having a home TSS.  We were nervous about it, but with Ryan being in school all day, we felt he was getting a good dose of structure, so we took a chance.  So far so good.  It is really nice not to have anyone in our home.  I think Ryan is doing well, and I think our family is doing better without the added interference of having someone in our home.  We are going to give it time, and we will see what happens, but so far, so good.

Feels like we are breaking up..

We had a big meeting last evening.  Chris and I met with our TSS and BSC.  Our TSS basically said she no longer felt like she was being effective, and was frank when she said it was in large part because of my lack of follow through.  She will continue his school hours, but will no longer be coming to the house to do his home hours.  Wow, feel like I have been kicked in the gut and broken up with!  I knew that I needed a break from having my house invaded by therapists, but I thought I would be asking for the break, not having the therapist walking out on us.  I

 understand where she is coming from, it just sucks.  Now we have to decided weather to have another therapist come into the home to do Ryan's home hours or to take on the home issues ourselves.  Ryan's home issues are few and far between.  He is a good little boy and the issues we have most often are compliance, which is manageable.  I don't want him to suffer because we are upset...I feel selfish for wanting to rid our lives of therapists in the home, but I do wonder if he really needs them at home???  They cut, color, do worksheets and talk, but he gets so much at school that I don't see how home hours are really a huge benefit to him.  We are taking few days to really think about what is best for Ryan and best for our family...I guess we will see what the next few days brings.

The Invasion...

I won't lie to you...one of the most stressful things that you will deal with when having an autistic child is the invasion of therapists into your home. I say that like it's a bad thing, and it's not, afterall these therapists are in your home to help your child. When we started this journey a while back, I never imagined the stress and frustration would come from having your home filled with another person or two on a regular basis. It is one thing to deal with all the complications of life that a normal family has to deal with, but then you add another person into the mix, it sucks. I owe a lot to our therapists, and they are wonderful and caring people, but I can not wait to have my home back. Having your house pulled together and being on your best behavior while they are there is a job in itself. I promise to have a party someday when this is all over and we no longer need to have home services...and you are all invited!

A New Journey Begins...

School ended and then a very nice summer was ahead of us.  Ryan participated in a summer autism camp and had a ball.  We were also blessed to have his private school kindergarten teacher spend one day every week with him.  It was a good, well rounded expereince in preparation to enter public school. 

Ryan turned six in June. We visited the beach, parks, amusement parks, zoos, family and friends through the summer..it was a great summer.  A week before school started, we found out that Ryan would have the teacher that we were hoping for.  We also had his ISPT as well as a meeting with the school district representitives.  Everything was working in our favor and Ryan was growing more and more excited about riding the big yellow bus.

We worked so hard for so long for this day...August 30th, Ryan's first day of public school, and it came faster than I could have ever imagined.  With a big smile on his face and a bounce in his step, Ryan started another journey in his life...the journey of his school years.  And with tears in my eyes, I celebrated the moment he got onto that big yellow bus.  We did it!

Graduation Day!

It has been an incredible year.  Ryan successfully completed his kindergarten year, and did so better than we ever could have expected.  It was such a joy to watch him participate in his graduation celebration and to reflect on the year that has just passed.  I remember feeling scared, unsure and sad sending him to a new experience.  In a short time, he was so confident, and was growing leaps and bounds developing with every step of the program.

 His teacher, and support system is the reason that he was so successful.  After the ceremony was completed he said his goodbyes and announced that he was done with his school and now he was going to his sisters school...he was so excited.  I feel more blessed than could ever be imagined at how far we have come since August 2009.  It has been amazing and was a true reward for all of the hard work that Ryan's grandparents, friends, family, teachers and support staff have put in to our little boy.   A huge pat on the back goes out to all of you, and please know, we could never thank you enough for the journey that you have shared with us.  Thank you!

August 30th, a new chapter begins as Ryan enters Fort Allen Elementary kindergarten program...stay tuned!

Going Along With The Flow...or not.

Most of us just ‘go along with the flow’ when it comes to our daily lives. We plan that we are going to have children, they are going to be healthy and beautiful. We love and nurture them, take them to their doctor appointments, get them potty trained and teach them their abc’s and 123’s. We prepare them to go to school by putting them in the top preschools, doing flashcards and workbooks and seeking out the best kindergarten teacher there is. We do their homework, pack their lunches, volunteer for special school day events, have conferences with their teachers. We have friends and family over to share our lives with, and the joys of our children. We get them involved in sports and activities, having play dates and birthday parties and put them to bed each night knowing we have done the best we know how for our precious little ones.

For the parent of an autistic child, it just isn’t that easy. You can’t just ‘go along with the flow’. There are constant battles in the autistic war. We too had a plan that we would have children and planned for them to be healthy and beautiful, but have been handed a different deck of cards then most. While we do everything that the parents above do, we also have the added duty of making sure that we are taking the extra time and steps to hope that our children absorb what they are supposed to be doing, so that hopefully they can go to a preschool and we dream that they will be able to go to kindergarten. We wish they could play on sports teams and do activities. Our kids usually aren’t the ones invited to birthday parties and play dates, and even if they are, there is added worry about behaviors, socialization and safety. We can’t dream of having friends over because our homes are full of therapists, and our families don’t get the luxury of coming to our homes to share our joys, they are too busy working on what the therapists have recommended for that day. We too have nurtured and loved our children. We too have taken them to the doctor appointments, and have struggled to potty train them and teach them their abc’s and 123’s. And at the end of the day when we pray to just allow our little one’s to go to sleep and sleep the night through as we are thoroughly exhausted, we answer the call of “Mommy or Daddy” for the hundredth time. Our little ones do not know how to let their brains relax to go to sleep. And we sit there feeling like there is so much more we could have done, never knowing or feeling we have done our best.

Each and every autistic child is different, no two are alike, which makes it that much harder to feel like you belong and have answers. You deal with such a full plate, and then you have to deal with life. Your house becomes a mess, your checkbook doesn’t balance and the utility companies are calling asking why you haven’t paid last months bill yet. Don’t dream about family outings that are peaceful and relaxing, and intimacy in your marriage becomes a standing joke. Nights are not restful, and days are filled with worry. And when you have tears in your eyes, and are praying to God and asking “Why Me?” You are reminded of that precious little one that has been a gift, and that every struggle is for them. And someday, there will be a reward. It may be a simple word or emotion, or that they have read their first book aloud, or that they have finally been invited to a peer’s birthday party and they looked just like every other kid sitting at the table eating cake, or it may be when they are graduating from high school and going on to college, but it will remind you that blessings come in all shapes and sizes. You will remember that you have been blessed.

I was thinking of all of these things on my ride home from work yesterday. I got a call from someone asking me for some guidance. I am not an expert, but I am always happy to share the steps of our journey. This woman told me about her 5 year old grandson who was low on the spectrum. They are desperately trying to get him into an autistic program like the one where I work. As of now, there is a waiting list of over 30 children and there are only 5 spots. I gave her all of the information that I could, and was surprised when she asked what would happen if they would pay out of pocket for him to attend the program? I was stunned. It is $57,000 per school year, an expense that most families could not afford, and I don’t think hers was much different than most. Her simple answer was, “we will do whatever we have to”. You see, while most of us are registering our little ones for kindergarten, she has realized that her little one most likely will not be able to attend a regular kindergarten. But, like most families of autistic children, they will fight this battle and will go on to win the war. My thoughts have remained with the family most of the day…God bless you A.T.K. and family!

It is not simple for the parent of an autistic child, and it is not fun. It is full of never ending questions and lack of answers. It is exhausting and frustrating, but in the end, the littlest things are rewarding. I tell you this not so you will feel sorry, but so you will have an understanding of the effort it takes on a daily basis. And that we view our children in the same light you view your children in. And if you know a parent of an autistic child, the next time you see that parent struggling with even the smallest task, you will remind yourself of how much that parent loves their child, as much as you love yours.

Hug your child, and hold them close. Hug your friend, so they are reminded they are not alone in their war on autism.

Going Backward...

So, we lost our beloved TSS. Amanda was so good to Ryan, and he really did love her. She had the opportunity to take a job using her degree. She is deeply missed. Since she left, Ryan has gone backward, not forward. It is so frustrating. We did get a new TSS, Lindsey, and she seems pretty good. I briefly met her, and she seemed very nice. I know that in time, Ryan will get back on track, and we will be moving forward again.

We had Ryan’s parent/ teacher conference this week. All in all, he is doing well and his teacher feels confident that he will be ready to start Kindergarten this fall in public school. Now starts the process of getting help for him and putting a support system in place within the public school. It is never ending, all the work you have to do as a parent, and it is exhausting. Wouldn’t it be nice if tomorrow there was a magical cure that would ease the frustrations? Anyway, I will continue to update his progress as we continue our journey. Till next time…