Tuesday, March 26, 2013

My Super Mom Cape

It's been a long time, and I haven't written because life has been going pretty well.  Ryan is maturing and with that, everything seems to fall into place a little bit better. It isn't until there is a true issue that I seem to have to leap into action to save the day, so most of the time, life is crazy and busy and we are making memories.

Recently, I had one of those save the day moments where I had to put on my super mom cape and leap in to action.  Ryan is so high functioning that sometimes it is easy to forget that he has special needs.  The education system is a prime example of this.  Why is it so hard for educators in public schools to often think outside of the box?  I know they are busy and have 22 other children, but each one of those children requires something a little different...they are not all text book and it is not always as easy as A B C 1 2 3.  They treat anything my son does as intentional instead of working to find a solution.  I want nothing more than for my little boy to be "normal" but I came to love and accept him long ago as his own kind of "normal".  Case in point is the email below that I sent to the school two days ago.  It was a collection of many frustrating months of not working on a solution expecting him to adapt to his environment instead of adapting the environment to him.  I flew off the handle a bit, but it is time for me to be angry and frustrated and expect results.  Here goes...

Dear Team,

Last week I had a conversation with Mrs. Rovedatti Jackson that was a result of many phone calls, emails and teacher/PCA notes over the course of several weeks. As most of you are aware, Ryan has been gagging and throwing up prior to and during the lunch period. This issue has been increasing and seems to be set off by the thought, smell and site of the cafeteria and certain foods. There are several things that have happened recently that have made both my husband and I very upset and feel the need to speak up.

I had been receiving notification from the nurse when Ryan would throw up. Each time I would reassure her that he was not sick and to send him back to lunch or the classroom. Approximately one month ago, I was called by a substitute nurse and asked to come pick him up. When I told her that he was not sick, she said that because he threw up I needed to pick him up. I stated again that he was not sick and she asked me what I wanted her to do. I asked if she had talked to his teacher or aide and she said "oh, he has an aide, no I didn't speak to her". I happened to be home sick, so leaving work was not an issue this time, so I went to pick him up. Just as every time before, he came home and was fine. While I do want to be notified when he throws up every time, I was quite upset that she wasn't even aware he had an aide, she didn't check with the teacher or aide, and there wasn't any note with this issue for her to read on his emergency card. I do not need to be judged, as I felt that day, for not picking up my son when it should have been noted somewhere that this is a common occurrence and the teacher or aide should be consulted.

I received a call from the school nurse approximately 2 weeks ago that Ryan had thrown up on the table. She was calling just to let me know, which I appreciated. She went on to say that she and Mrs. Rovedatti Jackson had talked and they feel Ryan may have something like an eating disorder. Anyone who knows Chris or I would know that we have tackled every concern we have ever had with Ryan if there was even the slighted sign something wasn't right. We fought to get a diagnosis from the time he was an infant, going to every doctor we could from here to Pittsburgh, not stopping until we had answers. We do not sweep things under the rug and if we thought even for a second that Ryan had something like an eating disorder we would have sought the advice of our physician immediately. Ryan was a patient of Barclay Rehab for quite some time. He was seen due to sensory issues being apart of his diagnosis. Christy Shaffer was his OT and worked diligently to desensitize him with food issues. You can't imagine how embarrassing it was to walk through the grocery store with a child gagging and throwing up as we passed the dog food aisle at just the thought of what was in those bags. After quite some time, Ryan successfully completed his therapy and was discharged. We no longer deal with this issue at home or in public, but the issue remains and is increasing in the school setting.

Ryan's teacher, Mrs. Mesich, is amazing and he really responds to her. Through conversations and emails, I have asked if Ryan was having difficulty in the cafeteria, why not send him somewhere else. She consistently reassures me that his time in the cafeteria is valuable and he enjoys the socialization. I am not sure who made the decision, but it was decided that if Ryan threw up, he would be removed to sit at a table by himself, and I think I heard he faces the wall. So now, he gets no socialization, is treated as if he has done something wrong, and the other kids see him sitting by himself. My husband and my worst fears are becoming realized that kids are going to remember that Ryan was the boy that threw up all the time and when he is seen sitting by himself they will know that yep, Ryan threw up again. Our BSC is permitted (by the school) only one hour a week in school to observe Ryan. Knowing this was an issue that needed attention, she devised a plan to have Ryan sit at the end of the table so that he has easy access to the garbage can if he felt the need to throw up and then he could quickly return to his seat. She also advised the aide/teacher that he should sit with, and be surrounded by kids that pack their lunch. It is often the sides on the food trays that come with the purchased lunches that bother Ryan. Please note that Ryan is also on 15 mg of Aderol for ADD, also a part of his diagnosis, which acts as an appetite suppressant for up to 8 hours so Ryan usually doesn't not eat during lunch time. Him not eating lunch is not the concern, the sensory issues with the lunch experience are the concern. For almost one and a half weeks, the BSC plan was successful, no throwing up, and we were so happy and praised Ryan for another success at school. Today while reading Ryan's school notes from Friday, it was noted that he had thrown up twice at lunch. So we asked Ryan why he threw up and he told us that Will hurt his foot and had to set at the end of the table by Ryan. Will bought his lunch, Ryan saw what was on his tray and he got sick. The aide's answer to Ryan was "do not to look at Will". So, the child that has a temporary physical disability received accommodations, but my child who has a true diagnosis with an issue out of his control has to deal with his environment or sit alone?

Mrs. Rovedatti Jackson seems almost as frustrated as we are and during our conversation early this week said she was very limited in what she could do and would put some thought into possible solutions. She did recommend that we seek an evaluation for therapy to assist Ryan with desensitizing his aversion to the cafeteria and food. We are willing to seek out any treatment that will help Ryan be successful but feel this is an issue that is occurring primarily in the school setting. We are requesting an evaluation with the school OT. In addition, the school district OT be used on a consultation basis with the teacher, aide and BSC to provide sensory adaptations/modifications to help desensitize Ryan in the school setting. We are also requesting a team meeting to make changes to the 504. We also want to know the duties and responsibilities the aide has to my child since she is the one working most closely with him...if there is a day "peaches" are being served, why is there not a contingency plan in place or if Ryan throws up, why is he not taken for a walk for fresh air? What if the teacher or aide are not in school, how will the substitute know? We have contacted an Advocate to work with us to ensure Ryan is receiving all that he is legally entitled and that the ADA is being followed so that in the next 10 years he has at Hempfield, will be filled with successes and not as much frustration and anger and we feel right now.

Individuals with Disabilities Education Act (viewed on ADA.org)
The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975) requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs.  IDEA requires public school systems to develop appropriate Individualized Education Programs (IEP's) for each child. The specific special education and related services outlined in each IEP reflect the individualized needs of each student. We do not have an IEP, but it has been observed and stated that Ryan is having a difficult time with some areas of learning that are challenging and will remain so as he moves into the higher grade levels...we want an IEP?

Thank you for your time. Please contact me to schedule a team meeting as soon as possible. My husband, our BSC, and if necessary the Advocate, will make ourselves available.

Thank you

So there you have it...getting ready to head into battle but this time I am taking an army with me.  We have an advocate, a first for us, on our side and I am loaded with the goal of finding solutions and doing what is right for Ryan.  No more Mrs. Nice Mom.  Wish me luck!

Thursday, November 17, 2011

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!

Monday, November 29, 2010

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

Sunday, November 28, 2010

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.

Friday, October 15, 2010

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.

Thursday, October 14, 2010

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.

Wednesday, October 6, 2010

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.

Monday, October 4, 2010

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!

Tuesday, September 21, 2010

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!

Monday, May 31, 2010

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!

Wednesday, March 10, 2010

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.

Thursday, January 21, 2010

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…

Wednesday, December 23, 2009


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!

Wednesday, December 2, 2009


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!


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!

Saturday, November 28, 2009

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.

Monday, August 17, 2009

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.

Sunday, July 19, 2009

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.

Thursday, June 25, 2009

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.

Tuesday, May 5, 2009

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

Monday, April 20, 2009

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.

Friday, April 3, 2009


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.

Wednesday, March 18, 2009

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.

Sunday, February 22, 2009


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'!