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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