What a week, wait it’s not over?

This week sure has has a little bit of everything. Happy moments, crazy moments, ugly moments, tantrums, new things and to top it off me and Santi have been sick all week. He woke up sick Monday morning and I quickly joined him Tuesday. He has a cold, flu call it what you will, we both have it. No fever for any of us just lots of coughing, runny nose, soar throat and a gagging cough that causes my poor baby to not eat. I’ve been pumping all week as he’s been eating very little, he tries to eat but gags therefore he refuses to eat. I started him on aconite, then pulsatilla and today’s he’s getting what I’m getting (through feeding) which is gelsemium. Alex and Julie are not sick thank god, nor is Luis, with me and Santi is more than enough. Hoping tomorrow me and Santi are back to our happy selfs and we can have an amazing end of the week.

Alex school: this week and half of last have been truly Unexpected. Alex usually has a hard time getting back into the grove of things after a school break, let alone a 3 week school break. But surprisingly he was eager to go back and has been doing amazing everyday! Well with the exception of Monday morning, since Santi woke up very sick and whinny and Alex was up at 5am, Luis went into bed with Alex to help him fall back to sleep and I stayed with Santi. This caused Luis to oversleep which honestly was the best thing that could have happened because with Santi so sick I couldn’t leave him to drop off Alex.
That morning started wrong from the minute we woke up. When Luis realized what time it was we quickly got Alex ready for school, he needed to be at work fast also. He was already 2 hours late. This morning was going wrong and I’ll explain how: First I put on Alex’s Toms when he clearly asked for his boots. Why didn’t I listen? Not sure, maybe I was stop tired to walk up the stairs again to get the boots he so loves. 2nd: he wanted to ride in the van which is what I drive the kids in all the time, but Luis needed to go to work so he needed to take his car. Alex was not happy about riding in dads car.
3rd: Luis parked the car in a totally different side of the school which is not where I park daily.
4th: dad never takes him to school, I do.
Once they get to school Alex looses it!!! He didn’t want to get out of the car, he screamed all the way into school and once inside he threw himself on the floor and wouldn’t move. Luis, his aide, and the case manager tried unsuccessfully to get him off the floor but Alex wouldn’t move. Luis called me and off to school I went, so clearly my plan to not leave Santi was a fail. I had packed some mandarin slices for his break and rice cakes, he had been on the floor with his backpack on his back so when I walked into school and saw him first thing I thought was ” his got mandarin juice now and rice bits and not cakes!” He looked at me and knew “O SHIT SHE’S HERE”. I started my countdown 1, 2, and get up Alex, he did. Not totally willing but he walked to class, he whined the whole way there and once there he refused to walk inside his classroom. Well that’s until the iPad was offered which he very rudely agreed to take. He did tell his speech therapist he wanted to play on it by himself so she let him. As long as he talks, he gets his way, well not always of course. The rest of the day was marvelous, so has Tuesday and today. His aide was happily surprised to see how easily Alex adjusted to his return to school, again except for dads drop off day. Either Luis takes him more often or never!

iPad: Alex has been on a waiting list for his own personal iPad for school since September and guess what? It’s finally here! They have proloquo2go on it and a typing feature so he can do his work on it. Alex is not fond of writing, why? I’m not sure, maybe it hurts his fingers, hand, who knows, all we know is that it’s not his favorite thing. So at our last IEP I suggested having him type up his assignments which I’m sure will be a great thing for him. They will introduce it to him tomorrow, we will see how it goes.

Helium: he’s back on helium 200C as the 1m didn’t give us the hoped for results. We might go back go it when there’s no full moon insight. Maybe that’s why it didn’t work as well, I guess we will never know it maybe we will. For now I thank The Lord for his great mood and disposition, hoping tomorrow will be an amazing day for us all. Keep Alex in your prayers, we need them as we continue on Alex’s journey out of autism.

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So far, so good.

It’s been a week since Alex started kindergarten again and I’m pleasantly surprised at what I’m seeing. First of all Alex is really liking his new classroom, it’s smaller (only 5-10 kids), a lot less noise, there’s many things that interest him there, his aide is feeling a lot more confident in that class I feel. He’s less tense as Alex is happier there, I think he’s getting a real chance at getting to know Alex now. Alex’s special education teacher has discovered Alex’s love for books and reading. Today he stopped me in the hallway and said to me “Lucy I wanted to thank you for reading to Alex, it’s very evident that you’ve been reading to him for a long time, it shows”. And he’s right, I’ve been reading to Alex since I found out he was in my belly, I wanted him to love reading as much as I did. Seems like its paid off, Alex started reading when he was 3 years old has a love for books that is admirable. A trip to Barnes and nobles while its super fun and exciting for him, turns out a bit costly for mom and dad but as long as its educational we’re willing to pay the price. Needless to say I’m very happy with school at this moment, I’m hoping it will only get better.

CEASE: Clearings at still at a stand still at this time, we’ve been playing around with a new remedy that I don’t want to talk about too much at this point as I don’t want to jinks anything. It’s been a week since the first dose and I’m very happy so far, the sleeping is still an issue at times. God only knows when we’ll find something that will fix that for good. For now I have to say we’re in a very good place, thankful for everything we have, for every second Alex seeks Jules company, for every hug Alex’s asks me for, for every look and word he delights us with, thankful for everyday, thankful for life!

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One good day for Alex means an amazing day for momma!

I am so happy to be able to share happy news from school. Kindergarten has been such a horrific roller coaster since day one, so happy we’ve finally figured out a way to enjoy the ride. In our last meeting we decided to place Alex in a special ed classroom at the start of his school day. This classroom is a lot smaller than the general education classroom, 5-8 kids compared up 25+ kids. There’s 3 aides plus the teacher which is awesome, there’s activity tables, iPad, computers, puzzles, books, all the things Alex likes. Add to that the HUGE reduction of noise, which is the best thing of all. Alex is very sensitive to sound, he gets very agitated, stimmy, anxious and grumpy when he’s exposed to too much noise. I’m sure this was one of the main reasons why the general education classroom was a bit much for him. This morning when we drove to school I told him about this new classroom and promised him he’d love it, momma didn’t fail him. When I dropped off lunch for him at noon one of the aides was smiling from ear to ear as she told me how great he did all morning, how much he loved the library and how great he did there! After all Alex loves books so I’m not shocked that he loved it. He was so happy and peacefully during lunch, even though the cafeteria was super loud he had a smile on his face which made my heart smile too.
After school I picked him up from the general education classroom, he was so happy sitting down reading a book with his aide, which I have to say was a lot more how should I say it…. Fun today :) He happily told me how great Alex did today, how much he enjoyed math time and reading circle. I have to say my praying payed off, god Helios us defeat autism today. Another victory for us, one more of many defeats for autism!

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Sad truth, cruel reality, when will it change.

First day of kindergarten sure is a special moment for many mothers, it’s a time of joy, pride, mixed emotions and time to let go of our little ones. I remember when my little brother and sister started school, all my mom had to do was drop them off at school, kiss them goodbye and off she went. She picked them up after school and they came home, played, watch tv, ate dinner and off to bed they went so they could do it all over again the next day. I wish my mom knew back then how blessed she was and still is.
For me this experience has been a lot different, horribly different. Kindergarten started less than 2 weeks ago and Alex has already been pulled out of school until his advocate and I can fix all the problems with his IEP team. Never in my wildest dreams did I think I would have to fight so much and so hard to get my son the education and services he needs. I always grew up thinking schools existed to help kids learn, get ahead, get motivated, to keep kids safe. I grew up not really knowing anything about special education. I knew there was a classroom for special Ed kids but never really gave it much thought. I didn’t know what happened in that classroom or why kids were there, I just figured its for special kids, maybe really smart kids or something along those lines. Growing up I never met anyone with ADHD, Aspergers, autism, or anything even remotely close to it. Now that I’m a mother I realize what special Ed is, what an IEP is, what autism is and all the things that come with it. I also know how sad and cruel dealing with school is, how much we have to fight to get our kids basic services, how frustrating the process is and how hated a mother who advocates for her child is.

When Alex started school back in January of 2010 I was totally blind to everything that happened behind the scenes of a special Ed classroom. I took Alex too school 2 days a week, 4 hours total. While I knew that was not enough time for him or any child at that, I didn’t know how to get more for him. I asked his teacher for more services and all I got in return was ” Lucy we’re doing all we can, there’s no way for Alex to come to school more, I’m sorry”. When his first classroom closed down I started reading more about special education and seeing what I could learn in order to advocate better for Alex. I had been so focused on healing his body that school was left on the back burner. Thankfully it didn’t take long for me to find a great advocate who is now my best friend. Another friend of mine connected me with her as this IEP topic was totally new to me. Thanks to her I’ve learned all I know now about the special education law and how to better advocate for Alex. It’s been a year since Aimee (advocate and best friend) and I met and we’ve been in more IEP meetings than I can count. Alex has been in kindergarten 1 week and we’ve had two IEP meetings already, let’s just say this IEP team is not the greatest. Alex has already been accused of biting 2 people (aide and speech therapist), he hasn’t been getting his daily one on one speech sessions, he has been provided with a communication device, his aide is not trained to work with kids on the spectrum, and Alex is being read the same 3 sentences every morning. The sentences read: 1. Alex is a student at “so and so elementary” 2. Alex is a student in ms so and son’s class. 3. It will be fun in ms so and son’s class. When I question the aide About the bite (less than an hour after the “incident”) the aide told me that alex had not bit him, that as he tried to stop alex from leaving the cafeteria his hand ended up near Alex’a mouth making contact with his mouth. He showed me his arms and sure enough there was mo bite. As far as the speech therapist goes, she said to me that Alex asked her for a hug and when she hugged him he bit her in order to relieve his tension, but never in a malicious manner, her exact words. The incident report she wrote only said “Alex but Amanda” nothing else, see a pattern here? About the daily morning sentences the case manager thinks its a social story, what a joke. They’re treating Alex as he doesn’t know anything, not even where he’s standing, the speech therapist without ever laying eyes on Alex said having one on one speech session (30mins) would be too much for Alex, plus transitioning would be hard for him too. Again this lady had not met Alex when making these statements. When questioned by me about why she wasn’t giving him his speech sessions her reasoning was that she wants him to get “acclimated” to the classroom routine first, then she’ll add her speech session in. Now if you know anything about autism you know that this is totally ridiculous, why would you teach Alex a routine, wait till he masters it, then change it for no reason. O yeah the reason is an incompetent speech therapist who has no common sense. I asked the team to have a sensory table put in Alex’s classroom as a motivator for him, for sensory breaks as needed and so Alex could have a fun relaxing way to release some stress. The case manager stepped in and decided a sensory table was too distracting for a general education classroom, she felt that If Alex needed a sensory break a Tupperware (maybe 12/4 inches) with beans would be sufficient for him, she reminded me that Alex was in a mainstream classroom not a special needs classroom, lovely right? Long story short these people aren’t there to help Alex, they are there to say no to any request I may have to make my son’s day easier, they say no to providing the right tools or accommodations that could help Alex succeed in class. They are setting him up for failure and in just one short week they’ve killed my sons spirit. He was so happy and eager to return to school, I still remember how happy he was the first day, how big his smile was, how excited and proud he walked into class that first day. By day 4 Alex was no longer interested nor willing to go to school, he stopped smiling and lost all interest. This week his advocate and i decided keeping him home was a better idea, for his sake and specially mine. I was a nervous wreck all day long knowing my son was at school and not happy. We will wait to meet with the special ed director and who knows how many more school and district people to discuss all our concerns s and hopefully get them resolved. I’m also interested in a district transfer as I don’t trust our current IEP team one bit. I know this will be a difficult battle but I’ve been in harder and bigger battles and came out victorious, I don’t see why this would be any different. Alex has two very strong women fighting and advocating for him, no fight is too big and scary for us. We are Alex’s voice, we won’t let him down.

Sad truth, cruel reality, when will it change.

First day of kindergarten sure is a special moment for many mothers, it’s a time of joy, pride, mixed emotions and time to let go of our little ones. I remember when my little brother and sister started school, all my mom had to do was drop them off at school, kiss them goodbye and off she went. She picked them up after school and they came home, played, watch tv, ate dinner and off to bed they went so they could do it all over again the next day. I wish my mom knew back then how blessed she was and still is.
For me this experience has been a lot different, horribly different. Kindergarten started less than 2 weeks ago and Alex has already been pulled out of school until his advocate and I can fix all the problems with his IEP team. Never in my wildest dreams did I think I would have to fight so much and so hard to get my son the education and services he needs. I always grew up thinking schools existed to help kids learn, get ahead, get motivated, to keep kids safe. I grew up not really knowing anything about special education. I knew there was a classroom for special Ed kids but never really gave it much thought. I didn’t know what happened in that classroom or why kids were there, I just figured its for special kids, maybe really smart kids or something along those lines. Growing up I never met anyone with ADHD, Aspergers, autism, or anything even remotely close to it. Now that I’m a mother I realize what special Ed is, what an IEP is, what autism is and all the things that come with it. I also know how sad and cruel dealing with school is, how much we have to fight to get our kids basic services, how frustrating the process is and how hated a mother who advocates for her child is.

When Alex started school back in January of 2010 I was totally blind to everything that happened behind the scenes of a special Ed classroom. I took Alex too school 2 days a week, 4 hours total. While I knew that was not enough time for him or any child at that, I didn’t know how to get more for him. I asked his teacher for more services and all I got in return was ” Lucy we’re doing all we can, there’s no way for Alex to come to school more, I’m sorry”. When his first classroom closed down I started reading more about special education and seeing what I could learn in order to advocate better for Alex. I had been so focused on healing his body that school was left on the back burner. Thankfully it didn’t take long for me to find a great advocate who is now my best friend. Another friend of mine connected me with her as this IEP topic was totally new to me. Thanks to her I’ve learned all I know now about the special education law and how to better advocate for Alex. It’s been a year since Aimee (advocate and best friend) and I met and we’ve been in more IEP meetings than I can count. Alex has been in kindergarten 1 week and we’ve had two IEP meetings already, let’s just say this IEP team is not the greatest. Alex has already been accused of biting 2 people (aide and speech therapist), he hasn’t been getting his daily one on one speech sessions, he has been provided with a communication device, his aide is not trained to work with kids on the spectrum, and Alex is being read the same 3 sentences every morning. The sentences read: 1. Alex is a student at “so and so elementary” 2. Alex is a student in ms so and son’s class. 3. It will be fun in ms so and son’s class. When I question the aide About the bite (less than an hour after the “incident”) the aide told me that alex had not bit him, that as he tried to stop alex from leaving the cafeteria his hand ended up near Alex’a mouth making contact with his mouth. He showed me his arms and sure enough there was mo bite. As far as the speech therapist goes, she said to me that Alex asked her for a hug and when she hugged him he bit her in order to relieve his tension, but never in a malicious manner, her exact words. The incident report she wrote only said “Alex but Amanda” nothing else, see a pattern here? About the daily morning sentences the case manager thinks its a social story, what a joke. They’re treating Alex as he doesn’t know anything, not even where he’s standing, the speech therapist without ever laying eyes on Alex said having one on one speech session (30mins) would be too much for Alex, plus transitioning would be hard for him too. Again this lady had not met Alex when making these statements. When questioned by me about why she wasn’t giving him his speech sessions her reasoning was that she wants him to get “acclimated” to the classroom routine first, then she’ll add her speech session in. Now if you know anything about autism you know that this is totally ridiculous, why would you teach Alex a routine, wait till he masters it, then change it for no reason. O yeah the reason is an incompetent speech therapist who has no common sense. I asked the team to have a sensory table put in Alex’s classroom as a motivator for him, for sensory breaks as needed and so Alex could have a fun relaxing way to release some stress. The case manager stepped in and decided a sensory table was too distracting for a general education classroom, she felt that If Alex needed a sensory break a Tupperware (maybe 12/4 inches) with beans would be sufficient for him, she reminded me that Alex was in a mainstream classroom not a special needs classroom, lovely right? Long story short these people aren’t there to help Alex, they are there to say no to any request I may have to make my son’s day easier, they say no to providing the right tools or accommodations that could help Alex succeed in class. They are setting him up for failure and in just one short week they’ve killed my sons spirit. He was so happy and eager to return to school, I still remember how happy he was the first day, how big his smile was, how excited and proud he walked into class that first day. By day 4 Alex was no longer interested nor willing to go to school, he stopped smiling and lost all interest. This week his advocate and i decided keeping him home was a better idea, for his sake and specially mine. I was a nervous wreck all day long knowing my son was at school and not happy. We will wait to meet with the special ed director and who knows how many more school and district people to discuss all our concerns s and hopefully get them resolved. I’m also interested in a district transfer as I don’t trust our current IEP team one bit. I know this will be a difficult battle but I’ve been in harder and bigger battles and came out victorious, I don’t see why this would be any different. Alex has two very strong women fighting and advocating for him, no fight is too big and scary for us. We are Alex’s voice, we won’t let him down.

What a week, I’m not saying this in a good way.

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What a week this has been, aggravations, sleepless nights, more words from Alex (good and amazing thing this week), Julie’s been eating a lot more (thank you Sacharrum off 6X), school visits and so much more. Since starting dtap 1M Alex has been super anxious, stimmy (vocally and physically), grinding his teeth, waking up at night with stuffy nose, some very light coughing but most of all super stimmy. Let’s just say dtap 1M is not our friend :(

Dtap 1m: I rarely use dilutions when I’m doing clearings, actually this is the first time I actually do give Alex a dilution. The only reason I did it was because watching him stimm like crazy (kinda like before I started our recovery process) is just too hard for me and him. He’s been doing so awesome at school and at home with the first 2 potencies that I didn’t even know how I would explain to his teachers why he was such a wreck this week. On Wednesday morning: 2 days after first 1M dose) it was very obvious that he was not himself, he was hand flapping constantly, running/walking back and forth, jumping and lots of vocal stimming mixed in. This would be very evident at school, so I emailed Sima and quickly started dosing Alex with a bottle of dtap 1M (4oz of water and 2-4 pellets) dilution she had me make for him. I dosed 1tsp every 15 minutes, after about 4 doses Alex was visibly a lot more calm. Isotonic was used greatly on Tuesday also, I gave him one before I started the dilution dosing and after. The rest of the day was a lot better and at school they had no issues thankfully.

Thursday: Alex was up bright and early (6m) and it was very evident that he would need more dilutions and isotonic to get through his day. Thursdays are long days at school so I was really worried he wouldn’t make through the day. I gave him dtap 1M dilutions once again hoping it would kick in soon. As we drove to school we did a dose as we left the house and again at school. Me and Julie stayed with Alex at school for about an hour until I was sure he was ok. I gave him an isotonic also as I saw he was not calming down enough to be able to perform the tasks they asked of him. About an hour after which equals 4 doses of the dilution Alex was able to relax and enjoy his day, me and Julie were free to go. At bedtime he got his 2nd 1m dose and as I suspected it, it was a long night.

Today/Friday: Alex was up last night from 1:30am to a little after 5:30am, Julie woke up at 6:30am so let’s just say I hardly got any sleep last night, the story of my life. Throughout the day Alex has been stimmy but not enough for me to feel the need to give him any dilutions. He’a stimmyness today is jumping, hand flapping, smacking the tv screen to get his anxiety out, but for the most part he’s calm. He has had 2 isotonic vials so far which have kept him pretty calm. He feels very warm to the touch today, no runny nose or coughing, just somewhat of a fever. He’s not moody at all today like the past two days. We’ve been watching tv and movies all day, momma has no energy for anything today.

Hoping this weekend won’t be too hectic, as I really need and want some rest. Being 28 weeks pregnant and not sleeping is not exactly what I was hoping for. I had massive headache this morning that Nux Vomica 30C thankfully tool care off, I’m sure the 8 enchiladas I ate helped a bit too! I’m on my second hypertonic of the day also, anything to keep me awake and on my feet. Whoever said being a stay at home mom was easy can come to my house do what I do for one day and I’m sure they would change their mind. Add to this 24/7 job autism recovery and it becomes MISSION IMPOSSIBLE X’s INFINITY!!! Thank goodness for mother courage and the immense love we have for our babies. That’s more than enough to keep any mom going for days without food, rest, sleep, help and water. Anything for our kiddos!

Hope everyone enjoys their 3 day weekend, let’s pray it’s an easy one for us all. To my CEASE family keep going, the light at the end of the tunnel gets closer everyday.

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And his voice is slowly coming to life!

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Out of all the things that have improved and blossomed this past week, one at the top of my list of favorites has to be Alex’s voice! I’ve been waiting 5 long years to hear my son speak, since I was pregnant with him I had dreams about what he would look like, how he would act, if he would be quite like Luis or super loud like me, I wondered about every single detail about Alex, little did I know how our life would be.
When Alex was about 8-9 months old he started saying “papa”which I was totally jealous about since I expected to hear “mama” first. Little by little his baby vocabulary started to expand, only to disappear a few months later. I always asked other moms if this was normal, if their kids were talking, I questioned our then doctor about Alex’s speech (or lack thereof), I switched doctors when this one kept giving me stupid and unreasonable excuses of why Alex didn’t talk. Things like: “well he does live in a bilingual home”, “boys do develop later than girls”, etc, etc. After 3 doctors and no real intelligent answers I started looking for answers. That’s how I came to autism and well you all know the rest. Long story short, I’ve been praying to god for a voice for Alex, I’ve prayed, asked, begged, demanded, begged and prayed some more for god to take my voice and give a voice to Alex . I offered my voice to god in exchange for one for Alex, if Alex could talk I would gladly and happily live silent the rest of my days. Many moms have said to me “Lucy his voice will come, just be patient, one day he will talk without you giving up yours”, ladies I think that time has come!

This past week I’ve noticed Alex’s sounds and words have been a lot more clear therefor a lot more understandable. His therapists and school teachers have noticed it too, today while reading through his speech session notes I saw a couple of things like: “today Alex greeted me with a “hi” all on his own, it was very clear and understandable”. Another note read ” Alex said “yes” all on his own without any prompting, then greeted his teacher with “hi” on his own too, his language is coming”!
I’ve noticed Alex talking a lot more lately, today for instance when he woke up he smiled at me, and then said “tv” I gladly said “yes Alex, go watch tv”. He asked for fries as his breakfast by saying “ffff” his rendition of fries and also made the sign “fries” as he knows very well he can’t pronounce the word well so he ads a sign to it which is very helpful for us to understand what his saying. What a smart little guy.

After school once we were in the car he wanted his “blues clues” book which was out of his reach, he said “mom book” and his words were just perfect!!! I was thrilled, I made him repeat it and he did and it was perfect again!!! His “dad”, “mom”, “book”, “me”, “up”, “bye”, “no”, “yes” and so many more words are becoming clearer and clearer every day. His speech therapist is super happy with his progress, I could see the excitement in her face as she talked about Alex’s words and sounds improving, his ABA therapists are super thrilled also to see his language blossoming right before our eyes.

Alex, your voice is something mommy has been waiting to hear since I first saw you, its been five long years but the wait has been so worth it, I’m so happy to finally get the honor to hear your voice. I can’t wait to hear all the wonderful things I’m sure you have to say, you’re so smart and sweet that I can only imagine everything you have stored and are just waiting for the right moment to let it all out. Hearing your thoughts and dreams will be such an honor, the feeling of being your mother is too hard to put into words, I love being your mother more than words could say.

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Being my sons advocate, makes me seem as an enemy to some.

Who would have ever imagined that advocating for my son would make me so HATED. I never thought this could be possible, not once did I think I would need to fight so hard to get Alex the services he needed. Not the services we WANT, it’s the services he NEEDS!!! Since stating our journey back in May of 2009 I very quickly realized that getting Alex ahead would be hard, that I would need to fight, research, investigate, basically do anything in my power to help my son, I knew that if I didn’t,  no one would.  From the day I heard the autism diagnosis I knew this would not be an easy journey, never once did I imagined how hard and painful it could be. Back then my fight was against the hospitals who had ridiculously long waiting lists to get evaluations they as well as I knew my son needed. And when I say long waiting lists I mean months long some even a year long. Then when you were finally able to get into the evaluation you had to wait MONTHS to get the therapies your child needed months or a year prior. I remember calling all kinds of places daily, desperate to find someone who was willing to help my son, desperate and lots of times in tears because I would get nowhere with any of this institutions. Thankfully   I ran into a person who told me about biomedical and DAN drs and I finally felt that I had found help, people who actually wanted and believed my son could be helped, thankfully I found HOPE. For a little while the fighting and getting nowhere stopped, again just for a while.

Now my battle is with the school system, something I never would have believed  or considered as a battle, I mean who would have thought it would be so hard to get a child with autism the services he needs? It’s very sad to realize that a child’s best  interest is the last thing on anyone’s mind except the mothers. Since starting this battle back in August of last year  to get services for Alex from the school district I have realized that  sadly his progress or well being was not a priority to many.  I’ve been labeled as a problem parent because I stand up for his rights, because I ask for more than the minimal. Because I asked for more than 4 hours a week of classroom time, HOW DARE I?  Or because I asked for speech therapy daily for my son who is 5 years old, nonverbal and with an autism diagnosis, WHO DO I THINK I AM, RIGHT? Maybe I’m seen as the bad guy also because I asked for a communication device for Alex, who again is nonverbal and desperately needs a way to communicate with others, HOW WRONG OF ME TO DO THIS!  Too make matters worse and make me look even more evil, after we were able to have all these services approved for Alex I needed to make sure they were being done. Which again makes me even more targeted as the bad person in this whole story, today specially I was treated in such a horrible disrespectful way that I was in tears on my way home from picking up Alex. I am sure this got to this point because  on Monday when I took Alex to school and his speech therapist wasn’t there (may I mention that last Monday she was gone too, and that she would be gone 2 days this week?) I called the person who can actually make things happen and who has the authority to change things if and when they are wrong. I called her to inform her of last weeks food incident (the food incident where Alex had his food taken away because he couldn’t say chips as many times as they wanted or needed him to, let me remind you Alex is not talking yet, he has some sounds but no real language yet) to ask her why if his speech therapist was not there I wasn’t informed nor did they have a replacement for him so he wouldn’t miss his speech session, also to ask why the data we had requested was not being taken, to ask why the communication device was still not ready for Alex, etc. Long story short she was not happy to hear that all this things were being ignored by her staff, so I am sure she spoke to Alex’s teacher about all this and maybe that explains why she was avoiding eye contact and even avoided at all costs speaking to me this week. Today she looked at me and didn’t even acknowledge I was standing there, yesterday she did the same thing, but today took the cake for the silent and pissed off treatment she gave me. She took so personal the fact that I can not let them get away with not feeding my son for something he can’t physically do, she is offended because I want actual usable data that can be measured and his progress tracked, she feels offended because I am there to pick up my son everyday, because I ask how he is doing, because I ask about the communication device with proloquo2go that they should have given Alex months ago, she gets offended when I ask for an IEP meeting, she questions me about why I need Aimee (our advocate) at the IEP meetings, she is very offended because I advocate for my son, I could go on and on. Today she was not afraid to show her anger towards me, she spoke about me to Alex’s aide like I wasn’t standing right in from of her, I couldn’t believe it! She said “I need to go inside and get paperwork for Lucy’s IEP meeting next week” and walked off, couldn’t she just tell me she had papers to give me? Then when she came back out she hands me the paper without even looking at me and just walked away! I felt so horrible and so sad to see how upset she was, why is she taking this so personal? Why can’t she see that all I am doing is  trying to help my son, I am not looking to be her enemy. That makes no sense, why would I want the people who I have to trust with my child hate me? Why would anyone in their right mind want that? Alex spends 16 hours a week in their care, that means a lot to me and the last thing I want is for them to see me as their enemy, if all they should be happy I am fighting for his rights, no other parent does. Also shouldn’t they be doing all this things I am asking for in the first place? Shouldn’t they take data on every child in their classroom anyways so they are able to track their progress?  Why is she so mad about me asking her to do something that is part of her job anyways?  Why would she be the one offended when it was my son who was punished by being deprived of his food for something he can’t physically do? Shouldn’t I be the one mad? After all he is my son and if don’t speak up for him who will?   As my friend said I just need to get used to this, be more tough and learn to not take this so hard, but the trick will be how do I manage to do this? How do I not cry when Alex’s teacher won’t talk to me? How do I know she is not treating my son in any wrong way when I know too well she doesn’t like me? How do I feel safe leaving him at school from now on? I just wish she understood where I was coming from, if only she could stand in my shoes for one day, only then she would understand my struggle.

Next week we have an IEP meeting to discuss all these issues, needless to say I am not looking forward to it nor I am eagerly waiting to see how worse this will get. I want to talk to Alex’s teacher one on one to try to make her understand that all I want is to help my son, I am not her enemy nor do I want her to see me that way. I sure hope this chat will ease things up and she can see that I mean no harm to her, all I want is to be able to get my son what he  needs.  I am not sure how she will take my words but at least I’ll  know I have tried to make her see things from my side of the fence, I’ll be praying that god helps her understand and we can work together not against each other. I have to try anything to help my son, anything.

Varicella 200C

Another week almost gone, another varicella potency done as well. On Monday I started Alex on the 200C potency, scared as to what this would further do to his sleep. Since we started this clearing every night is different, he sleeps through some nights, other nights he wakes up and stays up for a little or a long time. I have to say this is the only bad thing I’ve noticed with this clearing. Because during the day Alex has been a lot more calm, patient, understanding, just plain sweet, the little boy I’ve always known he was. He is not having any tantrums about being denied his beloved electronics, he doesn’t through a HUGE fit about going to bed, brushing his teeth, or even bathing!!!! Now this last one is HUGE, Alex screams bloody murder every time shower time rolls around. He associate it with me touching his head/hair which is completely OFF LIMITS TO THE WORLD. I can’t touch,comb or wash his hair, basically anything to do with his hair is not accepted nor tolerated by him. This week was a little different (even if it was just this week, I’ll take it) when I told Luis to put Alex in the shower Alex actually agreed!!! I thought I was dreaming when he walked himself into the bathroom and jump in the shower! He didn’t cry, protest, whine, nothing, he was as happy as could be under the nice warm water, what a blessing.

School: at school he has been doing great also, no problems reported at all. Today he was at school for 6 hours, to me it seemed like an eternity!!!! Thursday he goes to the 2 classes held at his school, morning and pm class, with an hour of free play and lunch in between. Me and Julie didn’t know what to do with so much time away from our Aggies, as she calls him. I don’t think I’ve ever been away from him that long since he was born. While I’m happy and excited his getting so many services I do miss him a lot when he’s not home. Today I called his classroom during the one hour free play time to see how he was doing. And I have to say I was very pleased to hear what his teacher had to say. Right at the time when I usually pick him up, Alex started asking for me, this just goes to show how much his made progress! He signed “mom and home”. I was smiling from ear to ear hearing this, Alex knows exactly where his at, why, and when his supposed to leave, by me not being there after his first class he knew something was up. Thankfully he didn’t mind too much and had a blast during free play.

Varicella 200C: tonight Alex got his 2nd and last dose of the 200C and I’m anxiously waiting to see how our night goes. Hopefully he sleeps through the night, I gave him an Epsom salt bath before bed and I’m crossing my fingers it will help relax him and keep him asleep.

Tuberculinum 200C: I have a dilution of this under Alex’s bed, it’s ready to go if needed. Diluting the potency we were on last week didn’t work at keeping him asleep or getting him back to sleep, thank goodness the tuberculinum dilution does do the trick. I LOVE TUBERCULINUM!!!

Keep Alex in your prayers, god is listening and making our prayers a reality each day!

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This clearing started out pretty hectic.

Like I mentioned in my last post last night (Monday night) we gave Alex his first Varicella 30C dose. He went to bed an hour earlier than usual since he has school in the morning on tuesdays. He fell asleep within minutes which was a breath of fresh air. Bedtime has been hectic for quite some time so when I see that he doesn’t complaint at all about going to bed my heart smiles. Since starting Tuberculinum 200C his sleeping has improved tremendously, going to bed was tricky, he complaints, cried, etc, he finally was able to fall asleep but it wasn’t without a fight. Last night and tonight Alex went to bed with no problems, he was happy and kissed and hugged me goodnight, what a great ending to a great day!

Last night (Monday): Alex woke up At about 11:50pm, he came into my room and after about an hour of moving around in bed unable to fall asleep I decided to ask Luis to take him back to his room and spend the rest of the night with him thinking it might help. Little did I know Alex would be up all night!!! He finally fell asleep again at 5am which means the varicella 30C dose was a big impact on his body. I knew this clearing would be tough but never thought the first night would show any sings of it.

Tuesday morning: since hearing from Luis at 5am that Alex had just fallen asleep I decided school was totally out of the picture. There was no way I would have the heart to wake him up at 8am to go to school when he was up all night. Little did I know he had other plans, at about 8:45am he came out of his room ready to start his day. How does he do this? I’ll never know, school here we go.

School: Alex was super happy to make it to school, he was happy and smiling from ear to ear as we walked in. He signed ” I love you” as we said our goodbyes and off he went, learning is his favorite thing. He had an amazing day, no issues reported at all. After school he had his daily speech session which I’m hoping will kick start his speech soon. He is so smart and has so much to say that I can not wait for the day when I finally hear his voice!

At home: when we got home from school I notice Alex was very happy, he smiled a lot, played and seemed extremely comfortable in his body. Maybe this doesn’t make too much sense to anyone who doesn’t have a child with autism but those who do know exactly what I mean. Alex was
totally away from his electronic toys today and was perfectly fine with it. He didn’t protest, scream and have a tantrum about anything today, what a change! He smiled so much at me today, he smiled with me, he hugged me, kissed me and just showed all his love towards me like he hadn’t done in so long. He kept coming up to me signing he was “playing” and laughed and smiled as he played by my side. Words can not describe the happiness this gives me, seeing him so happy and enjoying life is all I’ve been asking for. No riches or fame could mean more to me than this, nothing means more to me than this all I want in life is his recovery. Until we reach a full recovery out family won’t be complete, I know as every day passes we get one day closer to this, one day at a time.

Bedtime: Alex is peacefully sleeping now, once again going to bed was not an issue! The more I think about it, the more I love tuberculinum! I’m kinda nervous about later on tonight, we will see what varicella causes tonight. I spoke to my CEASE therapist about the sleep issue we had last night and she wants me to make a dilution of the varicella 30C in case Alex wakes up tonight: 2-3 pellets of varicella 30C
8 oz of water
Dose 1 tsp of dilution every hour for about 3-4 hrs. If this doesn’t get Alex sleeping again, dilute tuberculinum 200C and give a tsp to Alex and wait to see what this brings. Tuberculinum 200C has been very successful at helping him sleep so if the varicella dilution doesn’t work hopefully this will.

Full moon: I’ve said it many times and I’m sure you all know already that the full moon has been our enemy for years now. Phosphorus 1M kept us sleeping for about 5-6 months, than nothing else worked until Rhus Tox came into the picture and now tuberculinum 200C. I mention the full moon in case some of you are thinking that maybe the full moon is to blame for this sleepless night. Since being on tuberculinum and rhus tox the moon has not been an issue so I’m positive that last nights sleep issues are due to the varicella clearing. There’s no coincidences in the things that happen regarding Alexs recovery, if something is happening when I give a remedy it’s because of the remedy, period. The full moon started since Sunday, Alex usually would start waking up a day or two before the full moon. Alex has been sleeping beautifully every night except last night when he received his first varicella 30C dose. Hopefully our full moon issues are a thing of the past, for now I will enjoy our victory against it and enjoy it while and for however long it lasts!

Keep praying for Alex, prayers come along way when your battling autism or any hardship in you life. Stay tuned for more adventures from Alex!