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.
Monday, 27 June 2011
Thursday, 16 June 2011
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!
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!
Tuesday, 14 June 2011
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.
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.
Friday, 10 June 2011
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.
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.
Wednesday, 8 June 2011
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".
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!
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!
Thursday, 2 June 2011
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??
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??
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