God's Gift

I wanted to share with everyone my amazing day yesterday. First, I'll back track a bit. We were originally supposed to go to Reilly's gastro-intestinal scope today. Plans changed when both my boys got the chicken pox. Definately not the news I wanted to hear. I was really bummed out that I was going to have to reschedule his scope and wait to find more answers. In the midst of my horrible attitude about having 2 kids with the chicken pox and missing Reilly's scope, I had the opportunity to go to an Autism Forum. It was at the Clements Centre ( who I have mentioned on several occassions as being the best place on earth). At this place would be several autism service providers in the community and other local families with children with autism. Wow. I felt excited to go. Honestly, I was really scared to go at first.

Cowardly, I made a phone call to the Clements Centre to get some additional information on the forum later that night. I blurted out to the lady on the opposite end of the line that I was going alone and I was nervous that I wouldn't have anyone to talk to. She assured me that I would have many amazing people to talk to and lots of stuff to check out. Fast forward later to that night, I get dropped off to the Forum. A nervous wreck. I am pretty shy and going to this alone, sans my chatterbox husband was daunting. I was going to face the music and make the best of it. Almost right away I was recognized by the woman I spoke to on the phone. She made me feel at ease right away. As the night progressed I started running into people who knew my name. Trust me, it's a bit odd to have people walk up to you and call you by name. Each person told me that the lady had told them about me. How sweet. No longer did I feel awkward and uncomfortable. It became amazing to hear each person's story. Every person I ran into I felt as though I was talking to a long lost relative. They knew everything about me, and I could relate to everything about them. Yet we weren't related at all. Not in the physical sense, but emotionally, more than ever.

I could talk with ease about my son's situation. Without fear of judgement or worry. Finally I felt as though I wasn't alone. This was the night I realized how lucky I was to recieve such a wonderful, amazing little boy. True, I have mentioned before how I love him so much and how amazing he is. I mean really, how amazing and unique he is. I now appreciate all his idiocincries and odd behaviours. Its' what makes him who he is. I am glad God didn't create him any other way. To have such amazing people love my son as deeply as I do. How did I ever deserve to have so many people in my life who I consider family? God didn't want Reilly to grow up alone and secluded like I originally thought at the diagnosis. He wanted him to grow up so loved and cared for he gave him this unique outlook on life. People may think I'm crazy for saying this, but I truly believe this.  I cannot count on two hands the amount of loving, devoted professional and personal people who have created a special place in my son's heart. All because my son' has Autism. What a wonderful, yet scary and sad gift all at the same time. Yes, their are lots of days I am sad Reilly has Autism and try to accept how much of a long journey this will be. But only in that forum did I realize how much blessings I can recieve from having such a wonderful, special needs boy.

 No longer do I feel hatred and anger towards God for giving me a child with this disorder. But I thank him for introducing me to the most amazing, good hearted people I have ever met in my life. People I may have never met otherwise. Without Autism, I wouldn't notice the small things in life. How to be patient and more loving, more gracious and attentive. God has shown me these things in such a different way. Far from something I could ever want.

Aside from yesterday, today I had another amazing thing happen. So not the best news, I found out I have chicken pox. Already having it before, I was surprised I could get it again. Also very mad I got it again. I was going to have to miss a week of work. Yikes. Not the best timing to miss that much work. I sat in disappointment the whole way home to my husband who reminded me not to dwell on all the negativity and focus on it. Wow, he was right. I was doing that. I then realized how much Autism has provided for us and given us so many gifts. I don't think I could thank God enough for being there for me when I didn't think he was.

I have always tried to be truthful in the realities of Autism. Never have I opened up to the true feelings how I deal with having a child with a disability. I'd love for you to step into my mind for a minute and get a bit of perspective of sorts on how it feels to have a child like mine.

Have you ever dreamed of having children after your married? What they would look like, which spouses' traits they would have etc. I did too. The difference is that I was given something totally different. Not by cho ice. I was "drafted" into Autism, unwillingly. I went in with attempts at highest hopes but kicking and screaming at the same time. Fighting for normalcy but embracing the differences at the same time. I dreamt of having amazing children. Boy, did I take for granted the simple things you would expect to have in a child.

To be truthful, I don't enjoy Reilly having Autism 99 % of my day. I absolutely HATE it. I know he's utterly the most amazing, smart little boy but its sure hard to see when the Autism comes full force everyday. My son's true self is masked by this Autism every day of his life. Struggling to figure out who he is and how he fits into this world.

I fight for my son everyday. I forget about me. And so do others. We are going through so many emotions. This our journey and our emotions too. I wish someone would ask how I am coping today. Most days, not very well. Sure, I cover it up very well with humour and a brave face. I go back and forth with the acceptance that my child even has Autism. It wasnt' fair he was given this. I get angered at the plan some times that God has for him. For him to struggle and need so much. Why can't it be easier like other kids have? I can only relate the process of dealing with it as compared to a relative passing away. Grief, acceptance. All those things we go through. I have to grieve that my child won't be what I expected, nor what I want him to be. He will be him in the good and the struggles.

I feel as though I wake up to Groundhog Day everyday. Do you know how hard it is to wake up to optimism when you know you will go through the same motions everyday with the same person. We teach Reilly the same thing everyday, consistently. And everyday, he wakes up and we have to hope he will catch on to what we taught him over and over for months. Simple things as asking for juice, or knowing how to put a puzzle together. We had Reilly reassessed developmentally by his new therapy place the other day and he is still at a 1 year to 1 1/2 year old level. He is 3. I feel as though he has been stuck being a 1 1/2 year old mentally for a very long time. He may appear to be 3 years old physically but has not progressed mentally. Most kids are predicatable in their milestones. Reilly isn't. Reilly has holes in his milestones. I dont' know what the next step is. Hard to cope with not knowing what is next and how to prepare for it. You put on a brave face and hope for the best.

I pray for the days that my son can have the appropriate skills of his age. That he can be unstuck from this stage he is at right now. Everyday we try to get closer and closer to our goals. They may be very simple goals but everything counts. I cannot describe truly how difficult is is to live the Autism lifestyle. It has been the hardest thing I will ever face in my lifetime. You have to be completely selfless. 1000% devotion to him.

As I write this, teary-eyed and physically and mentally exhausted beyond reason, how lucky I feel to have such a unique little boy. The way he looks at the world, to his own little way of showing how he loves you. I wouldn't change him for the world. I just hope that everyone understands that it isn't just his journey, but ours as well. What takes him 1000% effort to do, takes just as much effort from us as well.

One thing I also have a hard time with is the change in our social situation. I am saddened that I cannot be a good friend to most people. It is so hard to be able to just pick up and go out for a coffee or go to a playdate. We have so much going on and so much of our day is devoted completely to Reilly and Zander. Between therapy, doctors appointments and everyday things we have no energy left. Not even for ourselves or eachother as a married couple. I say to my friends, don't take it personally that I cannot be there for you. I really wish I could be there as much as people are there for us.

I read a quote the other day and it was very true " When you have met a child with Autism, you have met ONE child with Autism." It goes to show how different everyone's stories are yet we all struggle with the same aspects.

Make a wish!

It's official. He's growing up. I am now a Mom with permission slips, school artwork, indoor school shoes, backpacks and snacks. Did he have to turn 3 years old? Could I not leave him in his bubble of tiny diapers,onesies and rocking him to sleep? It was about time he started Preschool. He's actually doing very well in preschool and we are very proud of him. I had a proud mommy moment when I picked him up the other day from school to have his teacher hand me his very first school art work. With a smile on my face and a tear in my eye all I could muster up to say was "aww". He's been making friends and having a lot of fun at preschool. It's been going better than we could ever expect.

As much as I love and accept Reilly the way he is, it's still hard to grief the fact that your child has special needs.No parent ever wishes thier child to be born this way. But the thing is that you don't have a choice once your faced with it. I cannot go back and change him. I can only go forward and try to make do with what we are given. Some days are better than others. I relish in the days he can sing me "Row Row Your Boat", but am sadden in the days that people look at him funny in stores and that he doesn't even know his own name. It broke my heart when he didn't even know it was his own birthday a few weeks ago.

I think the worst feeling is when you know your child is being judged. Right in front of you. It's hard because Reilly doesn't have the "face of Autism". He looks like any other child. On the outside. On the inside he must be screaming for someone to understand how he thinks and feels. Even as his parent I struggle most days to figure out what makes him tick. Hearing him talk sometimes is like trying to translate someone speaking a forgein language. You only know a key word here or there and overtime you pick up new words slowly.

It's going to be a long few weeks coming up for Reilly. He has a sleep EEG to check if he is having seizures when he wakes up, a follow up on his B12 issues at the BC Children's Hospital, a gastro-intenstinal scope, and a hearing test follow up. A full plate for a busy 3 year old. He's quite a trooper through out each medical test. He's such a strong little boy who has been through what any other 3 year old shouldn't.

His first shouldn't be doctors, MRI's, CT Scan's and therapy. But such is life, and we try to adjust to it as much as we can. It's tough watching your child scream and cry with each procedure. It's heart breaking but we just want the best for him and his health. Slowly we find answers but more answers lead to more questions.

"Bug off"

It's 10:45pm and I should be asleep. I stay awake thinking how lucky I am. I have such a wonderful life. An amazing family, wonderful friends, a beautiful and scenic place to wake up to each day. God has given much many struggles but many good things that I take for granted each day. I think we all lose focus sometimes on what is really important. I forget that my situation could be much worse. Most people who do know me know that I tend to put a humorous spin on my struggles with Reilly. I tend to make light when he's melting down in public or when any other autism "symptoms" are showing. Maybe this is my own therapy or maybe it's my way of lessening my stress. Who knows, but at the end of the day, I don't remember when he threw his shoes across the room in public, but I remember when he kissed me goodnight and he runs to me in the middle of the night when he's scared for a hug.

Reilly has picked up a handful of new words lately and were pretty excited! He did learn a bit of a bad word which is a bit funny but not at the same time. So he was talking to my mom on the phone the other day and was telling her "bug off"..which sounded like that to her but I thought after I was pretty sure what I knew he was saying. I won't say it but you can piece it together. lol. He is becoming more communicative and even saying "what's good" on the phone when someone calls. At least it sounds like that and I'll take it.

I may be a bit biased as his mom but I am so proud of him. He's such an amazing, smart little boy.  Brandon and I made cupcakes the other night and when Ry woke up and went to the fridge to open it the next morning, which by the way is his new obsession, he was in awe of all the little cupcakes surrounding the fridge. We thought he was being sweet by grabbing a cupcake and bringing us each one, even one for Zander, until we realized he wasn't just bringing us each cupcakes but taking all the cupcakes out of the fridge. Mind you in a very sneaky manner. Slowly enough that you wouldnt' catch on til it was too late that all the cupcakes were out of the fridge around the house. lol. Try running after a fast 3 year old with 2 cupcakes in his hands. He was in his glory running away from me. He thought he out smarted me by grabbing one in each hand and bolting but he didnt' realize I'd eventually catch up to him and try to gently take them out of his hands. Hey, they were good and I was not ruining any!

Reilly's Behaviourial Interventionist came by this week to meet Reilly and to start to establish a relationship with him before therapy starts. It's essential that they establish a relationship because therapy can get very intense and she needs Reilly to trust her and want to be around her in order for the therapy to be successful. They had such a wonderful play date and he loved her. Reilly will be having 2 Behavioural Interventionists' coming during the week to work with him. I'm not exactly sure on the hours yet but it will be aside from his preschool hours. As far as I know he will have therapy 2hrs a day/ 5 days a week.

I did have a very challenging day with both kids last week.   First we went to my work so I could discuss going back to work. Which went ok aside from Reilly not wanting to walk into the store and crying and dragging beside me. Zander was a bit fussy leaving but I thought I'd console him, via food, when we got to the next errand. We had to go into town and by this point Zander is hysterical and really upset. I try to feed him to no avail so I give up and put him in the snuggly in hopes he will calm down as we walk. He continues to scream as if Texas could hear him as we walk down the road with Reilly in the stroller. I get stared as we are walking, which isn't uncommon. I get to the bank and it's as if they knew it would be boring, Reilly starts to get really pissed off that we had to wait in line. He begins to drag his feet around in the stroller (like flintstones pushing it around, yes even with the brakes on). At this point I'm attempting to talk with the teller with two screaming kids. Ok not uncommon with most people but still frustrating. So I have one more errand to do so I say hey who cares let's try doing it. I go to the Service Canada place to take care of something for Reilly. I get there with both children still screaming. Reilly finally calms down as we get there until we stop moving again. Ugh. I go to sit down at the worker's desk with Zander screaming his lungs out and Reilly having just about enough in his stroller. I try to quickly console Zander and take him out and try to bounce him and rock him. Oh yes, this parent forgot her diaper bag or blanket so I can't feed him. Another ugh!So by this point, the lady is asking a billion questions and Reilly is in the process of throwing his shoes across the room along with his hat. At this point, I have everyone in the room staring at me. I mean everyone. They give me the look. Any other parent who has an Autistic child knows this look. Finally a lady helps me out and takes Zander to calm him down. Reilly at this point is screaming and pushing his stroller around. I get out of there with everyone killing me with death stares. Almost in tears I go to my nearby doctor's office to make a call to the Clements Centre to see if I can get him in the sensory room to calm him down. ( this place is 2 min drive away). I get in there and as I'm on the phone Reilly decides to whip his shoes off again and get upset. Great, again stares and Zander gets hysterical again because he's overtired, tired of hearing Reilly screaming or still hungry. I get out of the doctor's office without losing my cool. I drive over to the Clements Centre and look for someone to help me. Reilly's Infant Development Consultant isn't around and I ask if anyone could help me calm him down. I start to cry and had just about enough. Luckily they help calm me and Zander down and Reilly becomes a bit more mellow after a few attempted minutes in the sensory room. Wow, what a day. All I can really say, is for my sake, if you ever see a mom struggling with kids who are screaming and she looks overwhelmed, please give her some encouragment. We need it so much. Autistic children or not. It never is easy.

Ah, the life!

Good news! We found some regular,weekly babysitters for Reilly! I have one that watches him on weekends, mostly sunday afternoons and another lady that will come mid week to help out and take him for a walk etc! I promised Brandon that I would not clean during those hours and that I "must take a nap"! Trust me, that's a hard promise when your OCD! Reilly has picked up a few new words lately and is becoming more social. A new kid is emerging and were so excited, and therapy hasn't even started yet! He loves to call out Zander's name and today even called him "baby zander" or "z" for short he says. lol! He now refers to his room as "house" and loves to show it to visitors who come over.

Even though Reilly is glued to my hip all day, it's things like this that make this journey a positive one instead of all struggles. Today my acid reflux was bothering me and I was hovered in the bathroom trying to get sick (sorry for the detail there lol), and little Reilly comes in, ok doesn't just "come" in, comes barging in, and walks over to me and "hugs" me. I took his climbing and clinging to my back as some sort of hug.lol. Or maybe he was just trying to squeeze the vomit out of me..who knows! lol.

He's had a bit of trouble sleeping in his room. A change of routine when Grandma came to visit and maybe the melatonin has made for a few challenging nights. Hopefully he will be fine in a few days. We have noticed it has started to regulate his sleep a bit more. He's tired most nights around the same time and doesnt' fight it as bad as he used to. I wish for the night when he slept a full night in his room!

Reilly has also figured out every single way to take off child locks on door handles. That little houdini. I've tired taping them and everything and he can take it off without pulling it apart now! Sheesh! What a clever little guy. It makes it a bit hard to be a few steps ahead of him when your so tired! He also took a chair to the door a few days ago and played with the deadbolt with his fingers. Only a matter of time before he figures that out too!

On a good note, he'll be starting 40 mins of Ball Therapy with his Physical Therapist on Wednesday. He will go for 4 weeks and the good part is that I don't have to be in the room!! I can enjoy some "quiet" time with Zander in the waiting room! Brandon and I agree that we want to be fully involved with his therapy and be there but we also want to be his parents. We don't want to have to be his therapist and his parents. We have been there every step of the way so far and have been to every single therapy and appointment. It's exhausting and overwhelming for us. We want to be able to step back and take a break sometimes from having to be there constantly to watch him. Therapy should be exciting and happy for him. It wouldn't be fair if we dragged our tired and overwhelmed selves to each appointment. We realized were only human and were not being selfish by allowing ourselves some time away from the therapy too! Who knows, maybe he'll be different in therapy if were not around 24/7.

I really do feel like the luckiest mom in the world despite all these obstacles. Reilly is such an amazing, affectionate little boy who melts my heart when he kisses me on the lips each night before bed! But I must go, Reilly is stirring on the couch and off to the bed to get some tiny 3 yr old feet in the face or a hand in the shirt. Ah, the life!

Where do I start??

Whew. Finally I can take a breath for a few seconds and fill everyone in on the insanely busy schedule we have had and will have for the next while. We met with a place called Pivot Points which is a place where Reilly can get his therapy. We made the call, a few unanswered and frustrated days of waiting later, we got the call to have a meeting tomorrow to get the therapy process started!! They have a Behavioural Interventionist willing to work with Reilly asap! Their are several meetings, paperwork, assessments to go forward with a plan for Reilly's therapy. But it's a start and were thankful for the quick process for him. All the prayers of sheer exhaustion has paid off!

Reilly also met with a physical therapist today to discuss orthodics for his shoes. They ended up not working for Reilly so we have to looking into weights for his shoes so he can be more solid on his feet. We also set up some Ball therapy for him. He will go for an hour, once a week for 4 weeks to help with his balance and coordination. Which we discussed today is, for the most part, seperate from his Autism. They said that some autistic children have coordination issues but this seems to be a seperate issue. They have seen some leaps and bounds with his walking which was really exciting. He has made some progress walking up and down the stairs and pays more attention when he's walking. They did note he gets more clumsy when he goes to walk, run in another direction.

Also, through a friend, I am able to get a volunteer from an Autism Centre in Victoria to come meet with Reilly this week to see how she can help us with him! Any relief for us at this point is great.

We officially signed him up for Preschool and waiting for the call back to see if he got in and when he starts. He loves the classroom and I'm glad we found somewhere that he can be happy with!

Also, today at his physical therapy appointment we got a lycra shirt made for us, which helps compress him, it fits tight on him, and it helps calm him. They did discuss leaving the harness we have on him when we go out in public so we dont' have to grab him by the arms. He has hyper extensive joints so he acts very jello-y like and we dont want to hurt his muscles. We are able to grab him by the back of the harness for better safety for him.

Reilly also did something quite amusing this week. He thought it would be funny to throw his expensive shoes out the window on the highway. ha ha. We didn't realize until we got home that they were gone, but it was too late. He tried again the next day with a different pair, his hat and his little brother's clothes. He was able to do this by getting out of the carseat straps and reaching his hand out the window. Mind you, the window wasnt' down too much, but apparently enough for him! Note to self, never roll the window down for Reilly anymore! ha ha.

On a downside, we both are extremely worn out. It's starting to show physically on us and our health is starting to take a downturn with our severe exhaustion. I noticed I am losing a bit of weight, not eating regularly,losing hair, headaches, muscle pain, back pain etc..I am trying to get my doctor to do something about it so I don't end up having a mental breakdown, which is coming soon if things don't change. We are both trying so hard to make his life better and stretching beyond our means that we have forgotten to take care of ourselves and eachother. We pray that good things continue to come and that God strengthens us to stay connected as a couple so we can get through this. I cannot express how hard this journey is. Like any journey it comes with good and bad. We both agree that Reilly has come a long way this past year but it is still a process we are working our way through. All we can do is our best and hope that things can only go up from here.

Finally!!

Finally some good progress!! We picked a preschool for Reilly this morning! He will be going to Duncan Christian Preschool. We got a chance to tour the classroom and felt it was a perfect fit for him, it's a plus he knows some kids that go there as well. The teacher has experience with children with autism already in her class so we feel comfortable with bringing him to someone who already has a heads up on how to handle Reilly. He will start in September and go 2 half days a week! I'm excited for him! He cried when he left the classroom. He wanted to stay!!

We also met with a Behaviourial Interventionists with a centre called Pivot Points. We had a meeting with her to discuss what she does and what she would do if we chose her and her team to work with Reilly. We seem pretty confident we will choose this place because they have an opening, wiling to start asap with Reilly and they work in-home! If we did choose these people, they would pick the therapy people to work with Reilly ( speech path, occup. therapy etc). They have strict screening for thier therapists. They want the best of the best for the children. She also seems as though she will relieve a bit of the stress off by micro managing some paperwork that we won't have to do, ie funding etc. Reilly would have 2 hrs of therapy a day/ 5 days a week for around the next 3 years. It's up to us the amount of therapy we want him to have. We can decrease that amount or increase it. So 10 hrs a week. They are flexible when/if we need to go on vacation or a trip or if Reilly is sick etc. I'm not sure if their are other programs etc we need to do with Reilly at the centre in Victoria or not. It's only in the beginning stages and we haven't said the official " yes" yet to them. We are waiting for our meeting with the Clements Centre on Monday so we have a clearer picture of Reilly's future. We want Pivot Points and the Clements Centre to be on the same page with our goals for Reilly. So, for less confusion, the Clements Centre has the same types of therapy as Pivot Points. Speech Pathology, Occupational therapists, physical therapists, infant development consultant etc. Clements Centre is free, Pivot Points is taken out of our funding we get each year. They work together but work on seperate goals so more things are achieved in Reilly's therapy. Most places have wait lists so we will have to be patience in this process. We also learned Respite Care is in the far future. Wait lists are long etc. So we might have to try to rely on the people we know to help us get some breaks.

The melatonin is just starting to work so were hopeful it will continue to work so we can get some much, much needed rest! This is an exhausting process that takes our full energy. Between appointments, therapy, phone calls, at home therapy we do, to making sure Ry's not a safety risk to himself each day and the list goes on. It consumes your life. This is a life long battle. I get irriated when people think therapy will cure him. It will help him, not cure him. Autism is not curable. We have to be realistic that therapy will work and he will respond well, but he will also struggle with certain things for his whole life. Right now were just "putting band-aids" on the issues were having with Ry until we can get some therapy start. Please pray we can still push through all this and we can have some energy to be the other roles in our lives, husband,wife,son,daughters and gracious to ourselves as people. We don't take much time to be with eachother or for ourselves. Our 2nd wedding anniversary is Monday and were hoping to find a babysitter for Ry so we can have a nice quiet meal!

More than a Full Plate.

Have you ever heard of that saying "God doesn't give you anything you cannot handle". I really think he's given us a bit more. We saw Reilly's pediatrician today and are even more overwhelmed with more issues with Reilly. Will we ever get good news and relief anymore? So we go to Reilly's pediatrician to follow up on his B12 levels that has been an issue since December. By trial and error of a multitude of tests, we realized that his severe lack of B12 is not because of diet or metabolic. He had a horrendous amount of blood taken a few months ago ( 12 viles) to test for a metabolic disorder. So far the results are inconclusive. So from here we have to be forwarded to a G.I specialist. ( gastro-intestinal). Not sure what they will want to do, whether is a biopsy of a piece of his bowels or not. We also have to make a trip to the BC Children's Hospital to follow up with the metabolic testing.

We also were able to get a bottle of melatonin. This helps regulate his sleep. Autistic children don't have normal levels of melatonin ( a natural chemical in your body). They are able to function on little sleep. So far so good and he knocked out cold going to bed! Were hopeful he will stay in his bed tonight and give us some dire need of sleep. He only sleeps 4-5 hours of broken sleep a night.

We are also going to get in touch with a Behavioural Interventionist that will help us get started on some therapy for Reilly. We need this person to help us get into a Centre that will deal with all therapies in once place instead of having to deal with a speech path, and occupational therapist etc individually. We also have to sit down with Reilly's Infant Development Consultant tomorrow to go over our goals for Reilly in the next 6 months. Where do we see him and what would we like him to achieve. A hard task for us. Where do we start and what is more important to start with? We have a hard time figuring out what therapy is more important than the other. Or what therapy is which and what it will do to help Reilly. Their is a maze of information on therapy we are trying to sort through.  We have a tremendous amount of people to talk to on the phone and meet in person that it's almost a full time job keeping up with appointments alone.

So, our ped. told us today that if nothing is happening fast enough and if his behaviour continues to worsen and the melatonin fails to work that we will have to put him on Respirdal? It's an anti-psychotic medication to try to help calm him down. A very frightening thought for a not even 3 year old.

He will also be tested for Ehlers Danlos Syndrome very soon. He is getting a ridiculous amount of bruises on him that don't heal properly. His balance isn't improving as well. So were hoping this testing will give us some guidance with his occupational therapy.

We also have to look soon for a preschool that will take Reilly with a support worker. Not every preschool takes children with special needs like Reilly so we have a list of people we have to work through to see what fits him. School is ending soon so we have to get on this task ASAP for September. *whew*.

If your overwhelmed with everything I've just mentioned. Try having to deal with it everyday. I'm insanely tired physically and mentally. We don't know how much more we can take on the lack of sleeping were getting. Getting up with Reilly everyday around 5-530am is daunting. We are stretching beyond our means to help him any way we can.

It breaks my heart to know my innocent little child has to go through this. It's easy to take for granted the simple things in a relationship. I take every little gift Reilly gives me as progress towards his true potential. It's so hard watching your child struggle when deep down inside you see this amazing, intelligent child who cannot express himself. We want him to be the best he can be. We need so much strength and guidance to get us through this very challenging time. It's very hard on Brandon and I. We are trying very hard to stick together and talk to each other when we are frustrated or overwhelmed. Ending on a good note I had a very humorous "conversation" with Reilly today.
Me: "Reilly, Mommy is going nuts"
Reilly: "nuts"
Me: "reilly, you drive me insane sometimes"
Reilly: "insane"
*so as a test to see if he's copying only my words I throw in a funny word*
Me: " poop"
Reilly: "poop".
LOL. That kid.

Good News!!

I don't even know where to start! I haven't been this excited in a while! We met with Ry's Disability Social Worker and his Infant Development Consultant today. Finally some direction!! So we have to wait a week to get a funding application form in the mail. This will get us our 22,000 dollars a year in funding for Reilly!! We get to use this money for him how we see fit! After we get the form we will contact some places that work on therapy for Reilly and we pick which place works best with our goals. These places work on ABA ( behaviour therapy), occupational therapy and speech pathology. Every place is different and works on different things so we will meet with them, have an interview and pick which ones we feel will help him the most. From there we will discuss the amount of therapy we feel is needed each week and what kind of therapy he will need. In a few weeks we will be meeting with the Clements Centre and work out a plan for Reilly how to help him. Unfortunately their are 1-2 yr waiting lists but at least we will have the funded therapy and get on a waiting list! We will still be able to work with his Infant Development Consultant on a consistent basis, which is wonderful because I cannot describe how amazing this woman has been to us. She's been a God send for Reilly. She has given us so much advice, support and encouragement.

We will also work on enrolling Reilly into preschool in the fall! I cannot believe its' actually that time for him already! Where did my baby Reilly go?? He will most likely go 2 half days a week. The amazing part is he will have a support worker, that is funded with him at all times at preschool!! Wow! We pay for the preschool but we feel very excited that he will have someone there to help him out.

We loaned a therapy swing for Reilly today from the Clements Centre. It's sole purpose is to calm Reilly down. Swinging helps relax and calm him down when he gets upset and worked up. It hooks to our ceiling which is perfect that we can take it down so he doesn't play with it on his own.

Today we took Reilly to a Sensory Room at the Clements Centre. It has special pillows, blankets, lights and toys for children with sensory issues. He LOVED it!!! It actually helped calm him down to transition him to the car to leave. An issue we've been struggling with very bad for a long time now. Were going to look into to getting him some of the similar toys, which luckily we can get for good prices anywhere, ie consignment shops, garage sales. They aren't any special toys for the most part. We can set up a tupperware container of toys for Reilly to help him at home! Also when we were there we put on a big set of headphones on him. The large yellow safety headsets. It helped him focus a bit more and he kept wanting to put them on! So we are going to buy him a pair when we go out he can put them on!

This is just the tip of the beginning of the journey for Reilly. Things are coming together and I could cry in excitment for him. Finally he can have his true self come out and he wont' struggle so hard. We've been anticipating this day for a long time. We've struggled so long to get some answers and direction. The look on Reilly's face today when he could finally just be himself was a dream come true to me. Finally I can see this therapy will work for him. I can see the hope. He may be different and not be able to do the things like other children and we may have ups and downs for a very long time but a day like today gave me hope that my prayers have been answered. He's such an amazing, happy, bright child and I feel so lucky to have him in my life. I wouldnt' change him for the world. Autism or not.

This beautiful weather we are having has been our saving grace. Nice weather plus a very busy 2 yr old equals good bedtimes! If only we had a backyard! To start on a good note, Reilly has been saying some new words; ready,stay,please,welcome, and hand. He gets super excited when he go out and jumps up and down and says "yeah, yeah, yeah" while he puts his hands in the air. He doesnt' always talk but hearing new words is one step closer for us to one day actually have a intelligable conversation with him!

On a bad note, we've been very concerned with Reilly's high safety risk. He's a pretty dangerous kid and we cannot take our eyes off him. Because he has a very high memory he knows where the dangerous objects are in the house and will do anything, I mean absolutely anything to get it. Putting objects up high wont' suffice him. He will just go get any object, whether it's a chair,stool, box or any toy he can stand on, stack them dangerously even on the counter to climb to get it. He's ran around the house with steak knives, that he's taken from a safety-locked dishwasher and even walked out the front door on us. He's a big climber and very quiet at it so we never know what he's getting into. He doesn't tell us when he's hurt himself, nor does he acknowledge it, unless it really scared him from getting into something, so it's worrysome for us that we don't know where he gets all the bruises from on his body. We keep trying to tell him "feet on the ground", but with no luck so far. I think I should go buy him a bubble to live in! Who am I kidding? He'll just pop it! ha ha!

Were also looking at taking Reilly to a feeding Intervention team so they can help us with his extremely limited diet. Hopefully something will work so we will step out of our pb and toast and chicken strips or ketchup world.

One thing I did want to say about Reilly that most people don't know is that he thinks Brandon and I are pieces of furniture. Objects in the house, not parents. Were sure he just thinks our names are Mom and Dad, just like his name is Reilly. If he wants to sit on the couch, he won't sit beside you. He sits ontop of you. Which most people think, he's sitting on your lap. No. He makes no eye contact with you, backs up and sits on you and doesn't even say a word to you. It happens quite often and climbs all over us all day as if were objects to climb. Which if your a bit claustrophobic like I am, it makes it a bit frustrating!

I really hope one day he can look me in the eye and say " I love you Mommy". I have never heard him say it before and it would mean the world to me. The simple things in life people take for granted that thier children say or do, I wish our child could. I love him none the less but I wish I could see who he really is beyond the "Autism".

So much to do..so little time!!

I hope by writing this blog I can open everyone's eyes on the real story of Autism. No sugar coating it.  I want everyone to know the good, the bad and the ugly. I'd like to stress that Autism is such a broad spectrum that everyone is different. With Reilly being very young to be diagnosed, the typical age is 3 years old to be assessed. Reilly is only 2 1/2. I remember before we got the official diagnosis, I researched constantly to get as much information on it as possible. Let me tell you, living it and reading about it are two totally different things. Nothing I read in books or online even came close to the reality of living it. With that said, their are tons of amazing qualities to Reilly that are hidden among the struggles. We have started to realize that we have to live day by day, sometimes hour by hour. Life changes so fast with Reilly lately. One minute he can be fine and the next he is set off by something unexpectedly. It could be a sound, the look of something, anything. His meltdowns are becoming more frequent and intense. Meltdowns with Reilly are totally different than with another typical child his age. Once in meltdown mode, thier is absolutely no reasoning with him. Not a treat, toy or drink or hug can stop him. Their are no warning signs, for us anyway, and they aren't just for a minute or two, they sometimes last 10-15mins.

Reilly had a meltdown in Safeway today and he was unconsolable. He was yelling "stop it, stop it" and kicking and screaming and screeching very loud. He refused to go back in his stroller and was using as much physical strength he could to stop me from putting him in it. This last for 10 minutes as other shoppers stared at us trying to figure out what to do to calm him down. How unfair to a child who couldnt' understand.

With all that said, we did make some good progess recently. We have an appointment in a few days to meet with a Disability Social Worker to meet with her to discuss therapy etc. We also have a meeting with Reilly's Infant Development Consultant right afterwards to talk about our struggles lately and get some tips on how to cope with everything. In a few weeks we have an appointment with the Centre Reilly goes to so we can discuss what Reilly's therapy team has in store for him for the next year. Also in a few weeks we have an appointment with Reilly's physical therapist to discuss orthodics for Reilly's shoes so he can try to be more stable and balanced on his feet when he walks. We notice he is falling alot more lately and getting more bruises and cuts on him. Thier is alot more to share that we have going on in the next few weeks but it's been such a long day!

Day One...not exactly.

So, one week ago we found out Reilly has A.S.D, or also known as Autism Spectrum Disorder. We won't be sure where he is on the spectrum until he is approximately 8 or 9 years old. It feels as though Day One of this journey started last week, and a year ago. Day One also feels like everyday. Waiting for the journey to start, or knowing where it does start. We've only known Reilly the way he is now. It didn't come to a shock to us as his parents that he is Autistic. We've prepared ourselves for this for quite a while, which didn't make  it any easier, by any means.

Everyday is a struggle. What to do, where to go and how to find help. Most days it takes 1000% of our effort, yes 1000%, to make it through the day. A simple as a task as putting Reilly's clothes on in the morning is a challenge. Everything for him as for us feels like a challenge. A never ending challenge. I love our child no matter what. Who he is, what he does or whichever label or diagnosis is attached to him. I wouldnt' change him for the world. As many negatives and struggles thier are about his Autism, they are as many positives. It's just hard to see the positives through the tough negative ones. As soon as you try to see the light at the end of the tunnel it seems as though a thick brick wall stops you from seeing it. We always want to be Reilly's advocate. To help him and other's struggling like he does daily to know it does get better. But were just at the beginning and trying to find our way. All we can do is strap on our seatbelts and hold on tight. Do you want to join us on the ride??