Life Happens When Your Are Busy Making Plans

One of my favorite sayings is that "Life Happens When You Are Busy Making Plans"  I love that saying and how true it is.  Time has gone by so fast.  Here we are, finishing the first 9 weeks of first grade, and I have to add that we are doing it very well.  Since I last wrote, a lot have changed within our support team.  We are lucky enough to still have Miss Bonnie by our side.  Ryan has a PCA, Mrs. Stango, and a fantastic teacher, Mrs. Fox.  Academically he is doing amazing!  When his IQ was tested, it showed he was just below the gifted margin, so we have a smart little guy on our hands.  He just "gets" school.  Socially, we still struggle.  He makes friends, and loves to play, but sometimes he's just not appropriate...ahh, the life of an autistic boy.  He continues to amaze us everyday and is a true blessing. 

We had our first adventure with meeting with the school team and having to fight for what we thought was best.  Although we did not win the argument, neither did the school.  We tried to meet in the middle and compromise.  It was rough, but we got through it and have scheduled our next meeting for January.  Life is exhausting, yet rewarding.  Every day I am reminded that all we have done for our journey with Ryan has been worth it.  There is constant reassurance from our support team that because of how much we have done, and how hard we have pushed, Ryan is doing incredible and will be one of those lucky spectrum kids that will end up being able to face school and the world independently.  Thank God!

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…

Blessings...

This time of year, more than any other time of year, I find it easy to reflect on all the blessings the year has brought to me and my family. After all, health and happiness seem to be all that really matter when it comes right down to it. I have been blessed with a healthy family. We get through just about everything by sticking together and have the attitude that ‘when life gives you lemons, make lemonade’, and we sure do love fresh squeezed lemonade!

There is not much news on the ‘Ryan front’. All remains calm. We did find out that we will be losing our beloved therapist that works with Ryan during the school day. We are so happy for her as she is taking on the adventure of a new job, but very sad because a set back with Ryan will probably follow. We really do love and value the care she has given to him. She has assured me that Ryan is doing very well in school and will only need someone who will redirect him a bit and help to keep him on task. I hope she is right. Anyway, the positive side of Amanda leaving is that Ryan will have to learn to adjust and move forward and with public school on the horizon, I think that is a good thing.

Well everyone, Happy Holiday’s! I hope that the new year brings blessings to each one of you!

Reassurance...

Great news!!! Eight months ago we met with Dr. Faber for the first time. Since then, we have done everything in our power for Ryan. It has been exhausting, but this past Monday, all that we have done was rewarded. We met with Dr. Faber. He re-evaluated Ryan and asked a series of questions. At the end of the evaluation, he looked at us and said 'he is doing great and you guys are doing all of the right things for him'. As a parent you constantly question everything that you are doing, and when an expert in a field gives you reassurance, it is the best gift that anyone could offer you. Thank you Dr. Faber!

Instinct...

The one thing I hear more than anything from people I meet that have an austistic child is 'I knew something was just different'. Isn't it funny how our intuition as parents sets off a flashing light. So many people around me must have thought I was crazy prior to our diagnosis. I was constantly questioning what was wrong with my little guy. I knew in my heart that something was 'off', I just didn't know what. Friends and family would look at me with this puzzled look when I would proclaim 'something is wrong with him'. The most important piece of advice that I can give to anyone facing the same questions I once faced is to FOLLOW YOUR INSTINCTS! Do not listen to anyone around you, do what you need to do to find answers. If you do not fight for your child, who else will? Having a child with autisim is a 'war' and you will fight many battles. Some battles will be big, hopefully most of them are small. It may be tough but ang in there, and if you need to, cry on the shoulder of a loved one, go outside and scream, write a blog, but know that you have an amazing child that you are fighting for, and believe me, the fight will be worth it!

It's been a while...

I didn't realize how long it has been since I last blogged. So much has happened since August. Let me share our latest mile of our journey...

We were placed with a TSS (therapist) that was, well, awful. After giving him a good try and the benefit of the doubt, we asked FBR (our agency) to release him and find us a new TSS. FINALLY, our prayers were answered. Two angels came into our lives. Ryan was matched with a TSS for school, Miss Amanda, and another TSS, Miss Stacie, for home. Just about the time this happened, we made the decision to move Ryan forward and place him in a private kindergarten, The Growing Tree. There happened to be an opening in their full day program, not to mention that there were only 6 other children enrolled. This program came HIGHLY recommeneded by our BSC (our main therapist) as one of the best private kindergartens in the area. We were thrilled!

Ryan started kindergarten in late August. I was completely okay with this big change because to me, it was practice. The plan is that once Ryan completes the school year, he will move on to public school and will repeat kindergarten. We have no doubts that he will do wonderful academically in public school, but his behaviors and social skills will warrent repeating kindergarten, not to mention he will most likely be placed in a classroom with about 22 other kindergarteners. We feel this is the best direction for him. And in just a few short months, registration and meetings will begin to prepare the school for Ryan. He is already so excited to ride the big yellow bus with his sister.

It has been an amazing three months and Ryan has come so far. He has also been doing some private occupational therapy which has been a termendous benefit to him. We honestly feel that for the first time since, well, in Ryan's life, we are on a good track. It has been such a fight, up hill all the way, but since his first day with both of his new TSS, and his experience in kindergarten, Ryan has a chance to enter public school totally ready to compete and be just like every other kid heading to public kindergarten for the first time.

There have been no set backs, or battles, just positive news. We have waited a LONG time to feel reassured that we were doing the right thing for Ryan, and that time has finally come, for now.

Up hill battles...

So, the TSS that we really loved, Mr. Dave, left us a few months back. We were assigned a new TSS and had very high hopes that he would be able to step right in and get Ryan where he needed to be behaviorally. Well, that did not happen. Ryan has fallen further into his behaviors and we are no further ahead, rather further behind. It is frustrating. We are trying to do the right thing for Ryan, and we continue to have to fight up hill battles. It just goes to show you that the person guiding the autistic child can make all the difference in the world and can affect them termendously in a positive or negative way. God help us. I pray that this will all work out and that we will be matched with someone that can help us to help Ryan. Pray with me dear friends.

The Call...

I had just sat down to eat dinner with my husband. Both of the kids were with their grandma at a local park. As I was looking at the menu, my husband's phone rang. I watched him as the person on the other line gave him news. His face did not look good. I could only imagine what was being said. He didn't tell me, he just said, we have to go. We ran out the door, after appologizing to our waitress, and headed to the car. I asked what was wrong, and he said, 'It's Ryan, he fell off the slide and the ambulance is on the way'. My heart sank. Ryan is my heart and sole, and a life without him would be empty and without purpose.

As we started to head towards the park, we got a call directing us to go to the emergency room. We arrived before the ambulance, and it was the longest 15 minutes of my life. I kept repeating the Lord's Prayer in my head and I said my own prayer in between. Finally, the ambulance arrived. I saw my little guy being wheeled out from the ambulance. He was attached to a board by restraints, he was alert, but didn't say much. I could tell he was scared. I held his little hand as they wheeled him to a room.

One of my very good friends is an ER doctor, and we were blessed that he was working and able to see Ryan. I knew that he would not hold anything back and that he would take excellent care of my little one. After a thorough exam, CT scan and xrays, my friend the doctor said that Ryan seemed to be okay and that he could go home but should be observed.

As we drove out of the hospital parking lot, I reflected on all of the emotions I had during the evening. Fear was the greatest, but I knew that there were angels watching over Ryan. Everyone who meets him says that he is a special boy, and he is. There is something so special about him.

I didn't sleep very well as I continued to wake and check on him every few hours, but just to have him in my arms was a blessed feeling. It could have been a different story, but thank God, it all turned out okay.

New Adventure

God sure does work in mysterious ways.

Upon meeting with Dr. Faber a few months back, I took a look around at The Children's Institute. What an amazing place. Just like in the commercials, you see kids all over the place with their therapists in tow. They are scooting down the hall on bikes and all kinds of fun things. Looking at the people that worked there, I could tell that they knew they were important in the lives of the children and their families. I was in awe. I thought to myself, wow, this would be an incredible place to work.

The next day, a very good friend of mine sent me a link to an HR job. She stated that she had found me a job in her dream place to work. I opened the link and to my suprise, it was an HR opening at The Children's Institute. Long story very short, I got the job and start on Monday.

Thank you God for looking out for me and my family, always. I will be in the best place to get help and advice for Ryan, not to mention I will be a member of a company that really cares about helping kids and their families. I have prayed for an opportunity like this one, and here it is. I am blessed.

Happy 5th Birthday Ryan!!!

Happy 5th birthday to my amazing little man!!!

Ryan had a wonderful birthday. He got to spend the day at home with his friends and family. He wanted a Spider Man cake and a fishing rod. He got them both. It is unbelieveable that he is five already??? Where has the time gone.

Walk Now For Autism

Make a difference…

Dear Friends and Family,
On Sunday, May 17th, we will be walking for Autism awareness.

Autism costs the nation 35 billion dollars per year,
and is increasing with each child that is diagnosed.
A new case is diagnosed every 20 minutes.
1 in 150 kids are diagnosed with Autism,
and my son, Ryan, is just one of many.
Ryan is a vibrant, loving, sweet 4 year old boy.
He was diagnosed with Autism in July 2008.
Please help us raise money for research and awareness
by supporting us in the Walk Now For Autism fundraiser.
Every donation is greatly appreciated.


With much thanks and appreciation,
The Muir Family
Chris, Julie, Lindsey and Ryan
And Grandma and Grandpa too!

Donations can be made by contacting Julie @ julie_muir@hotmail.com

Great News!!!

I got great news today! Every step of the process with Ryan I have questioned my decisions. I have always wondered if I was, or was not, doing the right thing. At our recent visit with the DAN doctor, Dr. Faber, Ryan had to have a pretty heafty amount of blood taken. Dr. Faber did just about every test he could. I will receive all of the results on June 1, but in the mean time, in true Julie fashion, I couId not wait so I called his office to try and get any information I could get. His Nurse Practiciner was able to tell me that they did not find anything major in the bloodwork and even better, they found MMR antibodies, which means Ryan will not need his second MMR shot. The best news was that Ryan will not need to be on the gluten-free, casen-free diet. This is fantastic news! I am so relieved and happy. He can eat the foods he loves, and they are not hurting him. I almost feel relief for the first time in four and a half years.

Finally...

Finally, our day to meet Dr. Scott Faber had arrived. On Monday, we had the pleasure of meeting with Dr. Faber, a DAN (Defeat Autism Now) doctor. I wasn't sure what to expect, but I had heard that Dr. Faber really 'loved himself'. I went in with an open mind and found that Dr. Faber really believes in what he is doing, and has a love for his research and patients. I was hoping to find one thing that would help me with Ryan, and it so happens that Dr. Faber opened my eyes. He assured me that Ryan was extremely high funcitioning and kept saying how 'great' he was. He also offered his diagnosis of mild PDD, the lowest diagnosis under the Autism umbrella. Ryan had blood-lots of blood, drawn and I should know the results soon. Dr. Faber is testing him for anything and everything. We will head back to his office in just a few months and hopefully begin Ryan's transformation. I still don't think Ryan can be 'healed' but I do think that I can help lift the 'fog' from around him.

If anyone is questioning what help they should seek, the smartest direction to go would be to make an appointment with Dr. Faber. Even if he can answer one question, or help with something small, it will be worth your time and effort.

What the future holds...

I started thinking about the future last night....

It all came about when I realized Ryan needed his haircut. It is an event I dread all the time. I have mentioned in previous entires how embarassing the whole ordeal is. I started to think about the life Ryan will have. Will he go to school? Will he have friends and play dates? Will he graduate from highschool and go to college? Will he fall in love and get married? Will I have grandchildren? Ryan is an amazing child, and truth be told, the future scares me for him, but I don't really care about anything other than him being happy.

His therapists have tried to put my fears at rest and seem to think that going to public school and being main streamed will not be a problem. I hope so. He gets so excited when he sees his sister get off of the big yellow bus. I want him to experience that too.

Who knows what the future will hold. He is a smart little boy, and I have no doubt he is in store for some great things. I call him my angel, I believe that he is. He is my miracle and with me by his side, he will be able to do anything and everything he wants. I will help him get there.

Finally....

Finally, it is happening. The much anticipated day of Ryan using the potty most of the time, is right around the corner. He wears big boy underwear everyday, and pull-ups at night. I can't believe it and honestly, I really didn't expect to see this day for a very long time! He is not 100%, but I would say he is about 75% of the way to being potty trained. YEAH!!! Praise to the 'Potty Gods'!

A Step Forward...

Getting Ryan to do anything that he does not want to do is a tiring task. The little guy needed a haircut. It was always ultra embarassing to take him to the stylist. He was "that" child that just screamed. I tried to solve the problem by giving him haircuts at home. For over a year, I would hold him down and use the clippers to give him a haircut. He would scream, cry and would not hold still. His hair would never be even-but I did not have to suffer all the dirty looks I would get when I took him someplace to do it. It was painful. Well, it was time for him to finally have a big boy haircut, so off to Fantastic Sam's we went. He cried from the minute I said haircut until he was called back to sit in the chair. I put him in a "bear hug" and the very patient stylist put capes over both of us and then she started. He screamed, and screamed, and screamed. Everyone was staring at us. I counted to him the entire time, which I hoped would take his mind off of every pass of the clippers or show him there was a light at the end of the tunnel. He screamed until the stylist pulled out the tiny little clippers called "the Peanut". I kept telling him how cute the clippers were and he finally settled down and watched what was going on. As soon as his haircut was done, he got "big boy" gel put in his hair. He then put a big smile on his face. It was finally over, and he looked handsome and I was ready for a nap.