Harm that could/should/can be prevented.

So many dreams, so much hope, so much faith and at the end it’s all connected to RECOVERY. A recovery that would set my son free, it would set us all free. Free to explore the world without worries, without fear, without the uncertainty of how our surroundings might effect or ruin the moment. From the moment I found out I was pregnant millions of dreams were born, millions. I could see my sons face, I just dreamt of how beautiful he would be. I had dreams of hearing his voice, hearing him call me mommy, I wanted to see him crawling, walking, running, playing, I wanted to have him and love him with all the love I had in me. Love that many took for granted, love this child already own. Lots of my dreams and hopes were abruptly taken from me when I heard the word autism. With that many if not all my expectations and dreams would never happen (or so I thought at that moment), never become a reality, everything was over. Nothing was what it seemed, everything was a lie, a bad dream, or so I hoped. But it was real, my son has autism, how could it be? I was so clueless as to how we got to that point, when did my son slip away from us, when? How? Why? The question that lingers within us, why? Why my child? Why me? What did I do to deserve this? Why? Why? Why?

As I started my research I kept coming back to the same conclusion, VACCINES. Those “life saving” injections making many rich and powerful while on the other end the ones receiving them are hurting, dying, suffering and living with autism and many other illnesses vaccines caused them. It’s sickening to see all the children suffering, children who live in silence, who have so much to say but can’t because their voices were stolen, and now it’s our duty and obligation as mothers to speak up, to be their voice, to tell the TRUTH!

I’ve been sharing Alex’s story for years now, I’ve been talking to people, parents, autism mothers, people in the streets, people I meet at our annual autism walk, I’ve told anyone and everyone that’s willing to listen. I’ve said it in Spanish, in English, on paper, through our blog, over the phone, on fb, at Alex’s school, everywhere, but slowly I’m realizing that I’m saying it but they’re not listening. They are still vaccinating their kids, putting their children on medications which will lead to side effects which they’ll need more medications for and so on and so on. It’s the never ending cycle of allopathic medicine, they just want to keep you coming back for more, they want you to be a patient for life. I ask myself why aren’t people listening, why? Why is everyone in a rush to get their flu shot when there’s so much information on the vaccine insert itself of it’s lack of effectiveness. Why can’t people wrap their head around the fact the the “flu epidemic” is a result of their flu shedding vaccines? Yes everyone who gets a vaccine or the flu mist sheds the virus for about 20 days, everywhere they go spreading the so called “protection” against the flu. Then many who get the flu shot are somehow sick with the flu days later, hmmm? Who could that be?

At our house we’ve been sick for 3 weeks now. My brother caught whatever virus was floating around his school brought it home and 3 weeks later my kids are still sick. How could they not be? Alex goes to school and god knows how many people there got their flu shot. Yesterday at our IEP meeting his speech therapist and his special ed teacher both said they had gotten their flu shot, I then thought why not educate then a bit. I asked ” did you know that when you get a flu shot you shed the virus for days? And that in the vaccine insert it clearly states that basically IT DOESN’T WORK, it DOESN’T PREVENT THE FLU?”
They said “really?” I said “yes, really and that’s why so many people are sick, because of all the shedding the flu recipients are doing”. No wonder my poor children specially Santi and Julie can’t get over this, it’s everywhere we go!

Lets talk about the gardasil vaccine that supposedly protects you again HPV and cervical cancer . It was started as a vaccine targeting girls age 9 and up. Well not happy with all the god knows how many innocent girls they permanently scared with this vaccine now their giving it to boys. Cervical cancer + boys = ? ok let me try this again, cervix + boys = ? Why doesn’t this add up? O yeah maybe because boys DON’T HAVE A FUCKING CERVIX!!!!

Dear Christ when will this crime end? When? How many more children will need to be sacrificed for people to open their eyes? How many more flu shots will be given out that are causing people to get sick? The vaccinated and the ones around them. How much longer?

Because of vaccines Alex now has autism, autism that could have been prevented. Prevented by not vaccinating my son, if only I had known. If only I could go back and change everything, if only autism wasn’t part of our lives. If only autism didn’t exist, period.

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This year is off to a great start!

While last week was a bit hectic due to Santi and I being sick I have to say we’ve had a great past few days. Santi is back to his cute healthy self again and well, I’m still a bit congested but on my feet which is more than I can ask for. Being a mother of 3 gives me no chance to be sick and in bed, it’s a luxury I can not afford.

School: this week has been, well very interesting since Alex hasn’t been to school all week. On Monday since he was awake during the night (don’t ask, why) he woke up late and felt warm to the touch, had a bit of congestion, and asked very politely to stay home. I was so exhausted that I happily agreed with him and we both went back to bed. All day he seemed somewhat down, very little appetite, just not himself. Tuesday night he slept all the way through the night and in the morning would t get up. He stayed in bed till 10am and again he didn’t look ok, I guess he caught whatever me and Santi had. At about 11am he asked to go see his old teacher and as we all know of Alex talks Alex’s wishes are granted. I called his old school and set up a time to come by. Alex was so happy to see his old speech therapist and teacher, it was great seeing their faces as they heard him speak! When he left their school he had a few words but lots of them were hard to understand, now he has many more and they are super clear. They loved hearing him read to them, talk to them, say their names, it was a moment to remember for sure. And did I mention Alex has a new look? Well they loved it! They couldn’t stop talking about how great he looked, how handsome and in style he is. Music to mom’s ears!

New look: once again Alex was super excited about his hair cut, dreams do come true! And this time we went all out and cut it all off. New year, new experiences, new words, new look!

video 1 by the way last time Alex got his haircut this is the same cape the stylist used, Alex remembered and asked her to use the same one! What a memory this kid has!

video 2 here you see Alex saying all done but he means done with the machine and for her to use the blow dryer again. We were so scared he would be scared of it but he wasn’t at all, he kept asking her to use it!

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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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I need to learn to let go and always remember god is watching out for him.

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From the day I found out I was pregnant with Alex my fears went from 0 to 100 in seconds. After the joy of just finding out I was pregnant then came all the worries and endless questions. Will the baby be ok? Will he/she have 10 toes and 10 fingers? Will it be a girl or a boy? Will the baby be healthy? All sorts of questions most first time moms have just multiplied by a million. I’ve always been a worry freak and being pregnant and knowing a life would soon depend on me was more than I could handle at times. I knew I loved this little person more than anyone in this world, but I also worried so much about how I’d protect this child. When Alex arrived he changed my life in ways I never even dreamed of, I waited anxiously for his first smile, for him to crawl, his first steps, and most of all his first words. His first word, finally came and it aas papa, boy was I jealous when he said that, I figured it’d be momma since he spent every minute of his life with me and not Luis. He’s words and baby talk came and just like that it was gone, Alex was silent and I didn’t understand why. Little did I know back then just how long it would be before I heard Alex’s voice again. 4 years later god granted us our wish, Alex is able to talk again. He’s able to tell us how he’s feeling, what he wants and needs, what he sees and even narrate his favorite part of his many books. Alex sometimes surprises us with 4-5 word sentences. He’s come so far but we still need and want more. I need Alex to tell me what he’s thinking, I want to know everything that beautiful head of his holds. I want to be able to hear from Alex’s mouth what happens when I’m not with him, I want him to tell me what happens when I’m away, I want to hear everything he has to say, it’s one of my biggest dreams. I’ve been praying so much lately and begging god for a miracle. Alex’s voice means so much to me, it’s the one thing that I need to make my world complete.

School: this is one of my biggest fears at this moment, specially with our current IEP team. If only Alex could be talking fluently my fear wouldn’t be so great. I’ve kept Alex out of a school for two weeks now for reasons I’ve mentioned I’m previous posts. Sadly sending him back to our neighborhood school is inevitable, yesterdays IEP changed many things but not the school he would attend as I hoped for. Alex’s language is at a stand still which doesn’t make the school subject any easier for both of us. His language came and it hasn’t progressed as fast as I wish it did. I hope I’m not sounding ungrateful, I am very thankful for all the progress Alex has made but as any mother I want my son well, I want my son healthy just the way god sent him to me. I want a full recovery for many reasons: first: so he can be happy, second: so my happiness can be complete, third: so Alex can live the life god always wanted for him. I know we will get there someday, I can only hope and pray that day is soon. The faster, the better specially since he will be going back to school on Monday. A school I don’t like, with people I don’t trust, a school that is our only option for now. I could keep him at home but that’s not good for him either, he needs and has the right to an education. An education we’ve been fighting so hard for, an education that no one will take away from him. I’ll keep praying and hoping that everything works out at school, I’ll keep a close and watchful eye to make sure his IEP is being followed and implemented. I will be at that school as much as I can as Alex can’t tell me what happens there. I can only ask God to please help Alex’s voice come completely, please help Alex heal completely, he needs it and I need it even more. My life will never be complete until Alex is healed, I won’t stop until we reach Alex’s full potential. He depends on me and I won’t fail him, I can’t fail. I’ll hold Alex’s hand till we reach the finish line, a finish line where complete happiness will be our reward.

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Alex weekly update.

End of the week and things are somewhat better with Alex, I spoke to his homeopath on Wednesday about his up and down moods and his sleep issue. Alex has been aggravating from his second Tuberculinum 1M dose and just when it seemed to be getting better (last wed-friday) things went totally wrong again over the weekend. I still can’t forget our horrific mall episode from last Saturday, I told her about this and so many other things and she instructed me to re dose Tub but this time the 200C potency. She was hoping that this would lessen his aggravations and hopefully smooth out his any issues. Wednesday night I re-dosed and he slept all night how I wish I could say this every night.

Thursday: he woke up super calm and ready to start his day. He had no issues about going to school or getting ready, usually he says no to going even though once there he runs inside as happy as can be. Thursday are his long days at school, the other days are 3 hours long, Thursdays are 6 hour days. When I picked him up he saw me and ran to me with open arms, one of the best feelings ever when I see his face light up as he sees me. He’s aide filled me in on how his day went, no tantrums, no issues transitioning, no problems at all! Since he had been on a 2 week break this being his first week back he had been struggling to adjust once again, specially at transitions. She told me something that I will never forget as long as I live, she was telling me that Wednesday he had a hard time at table time, he didn’t want to do the task he was assigned to so he got very angry and tried scratching her and even made a move to grab her hair. She told him that was not ok and gave him some time to calm down, once Alex was calm again (after about 2-3 minutes) he grabbed his Ipod (which they have installed a communication app so he can tell them his needs, wants, etc), he pressed the ‘I am sorry, I love you button” and hugged her tightly. My heart melted and I felt like crying when she told me this, she said she was so moved by this and that she loves him also. I love to hear that Alex has a way to communicate his feelings and needs at school even if it is through a communication device, I know one day it will be with his voice for now a communication device and signing are HUGE blessings.

My cowgirl!

Friday: Today was easy at times and super difficult at others, Alex woke up at about 5am, and went back to sleep around 6am until 8:30am. He was calm and happy, nicely sharing things with Julie, just a perfect morning. Around noon I had to run to the mall to buy some pants for my brothers first communion tomorrow so as much as I didn’t want to take the kids out I had no choice. Alex was doing perfectly at the mall and the car ride there but as soon as I told him he needed to wait to be able to go to the play area all HELL BROKE LOOSE. As much as I explained to him that he needed to wait and we would go there once I was finished with my shopping he still screamed and screamed some more. I swear I have no idea where I get so much patience from, god must truly be behind this cause without him helping I would have ended up in the mad house a long time ago. I finally took him to play and thankfully he had no problems leaving, I guess as long as he gets to play for a little while and get it out of his system he is fine. The rest of the day was great until we decided to put a Jessie (cowgirl from Toy Story) costume on Julie, Alex totally lost his marbles when he saw her wearing it. He HATES seeing her wearing costumes or wearing them himself for some reason. He screamed and pulled at Julie’s costume while she fought him off, god I HATE AUTISM, I hate it with a passion! Alex cried and screamed so much that he ended up having to go to bed earlier than usual, I need him to understand that if he doesn’t like something it doesn’t mean his sister can’t do it. It’s moments like these that I truly wish I could just hide and never come out again, seeing my kids fighting over something that they should never fight about kills me, seeing Luis yelling at Alex over his tantrum which I am sure he can’t help breaks my heart. I know Luis was just standing by Julie’s side but I just wish he had a better way of handling these situations. I can not wait for the day when we don’t have to deal with autism, I live to see that day.

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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IEP meeting, dentist appointments, Varicella clearing and life.

As I mentioned in my last post yesterday we had an IEP meeting at Alex’s school. We had quite a bit of things to go over, talk about and hopefully repair some damage that had  been done. As we entered the room where the meeting would be held I noticed the situation between me and  Alex’s teacher was still not comfortable, for her and me. Alex didn’t want to go into the classroom we would be in as it isn’t his usual classroom, this I thought would be tricky. Thank god he quickly found fun things to do, books to read and the OT brought out an IPad which fixed the problem instantly. As I sat down to start the meeting I couldn’t help to be super nervous, I felt uncomfortable (may I add we were sitting on kid side chairs which are not comfortable at all) anxious, just plain sick to my stomach. Alex’s teacher was making NO EYE CONTACT with me which made me feel bad, she was looking at Aimee every time she wanted to direct anything to us. As the meeting went on I could see that for one the data we had asked for was not being done at all, secondly the communication device issue was still a “work in progress” which is a very slow process due to who knows what. The communication device was something I wanted to make sure we got taken care off at this meeting, I questioned them on what the plan was regarding obtaining an Ipad for Alex and not just borrow one. Since there is a HUGE communication gap between the augmentative specialist and me, she doesn’t keep me up to date and is for sure not working fast enough on this subject.  After going back and forth for a few minutes (where things were getting kinda loud) I finally asked and demanded a set date for this issue to be resolved. According to the IEP team they were giving the Proloquo2go and Sonoflex a try, this two are communication applications on the Ipad which they can’t decide on yet. I told them that is all great but I need this done ASAP, this issue has taken way too long and if I didn’t put a date on this trial I am afraid Alex’s would leave their classroom before they took care of this. They have until April to figure out which app works better for Alex, from their we would begin to pursue funding for an Ipad for Alex, one of his own not something he will borrow. One issue down, many more to go.

Go Talk: the go talk is a low tech device they have been using with Alex for a little bit over a month now, it has worked really nicely for him and has helped him get his thoughts and needs across at school. His morning teacher was telling us how much Alex is using this device during various activities in his class. Alex has used the “go talk’ to greet his classmates during the morning greeting song, also to say if he likes something or not, to make choices during “free choice time”, to protest or to say anything he pleases! What really brought us (Aimee, me, and Alex’s teacher) was when the morning teacher said how happy and proud Alex felt/looked/and seemed knowing that he has a way to communicate with others, that totally made us lose it. Aimee knows and has felt everything thing I have felt when it comes to our boys, her son was nonverbal also for a few years and I am sure that brought her back to those days. I was so happily surprised to see Alex’s teacher get teary eyed when we cried about this HUGE MILESTONE in Alex’s life. That told me she does care for him and there is hope here, all we need to do is communicate better and things will get better. At the end of our meeting Aimee said that she needed to clarify and make sure they understood why we were doing what we are doing, meaning why we are fighting so hard to get Alex the services he needs. She started by saying that we understood how underpaid they must be, how overworked they must be, how it’s not necessarily their fault we are in this situation (us against them), how it was the people above them who set us up to go against each other. That we understood they meant good but just had their hands tied, but at the same time we also wanted to be understood also. We wanted them to know how painful this process is, painful, stressful, so personal and so heart wrenching, after Aimee was done it was my turn to speak. I don’t know how easy or hard it is for other autism moms to speak about the struggles our kids face but for me its super hard. It takes me less than a minute to start crying, I can’t even talk, but I tried my best to get my words out. I spoke directly to Alex’s teacher who has been the one that has taken all this the most personal, I wanted her to understand that this  is nothing against her personally, this is about my son, about his life, about his progress, about him having a chance at life. I asked her to open her mind and just think about  the desperation I feel knowing that if I don’t get Alex the services, therapies and treatment he needs now that he is young I could lose the opportunity to help him get ahead. I explained to her that I don’t have all the money in the world to have  therapists in and out of the house giving him what he needs,  that I needed them to help me help him get ahead. I needed their help to help Alex succeed, I wanted them to know that I am not their enemy, I am only a mother desperate to help her son. I made it very clear to them that I want to work together with them, work as a team, work for Alex. As I spoke everyone cried, Aimee, the speech therapist, Alex’s teacher and watching Alex’s teacher made me cry as I realized how sensitive she is and how touched she was by my words. I could tell that she loves Alex and means well, all we needed was to talk, get our feelings out and things would be well. I feel so much better after knowing that Alex has a teacher who cares, who now knows I don’t mean to offend her, that all I want is my sons health, his progress, his  happiness.  Now I know that Alex is in a good place, with good people and most of all making progress. Again there are things we still need to fix but most of all I am happy to know his teacher and me are on the same page.

Dentist appointment: This has been hunting me all week, taking Alex to the dentist is a scary thing for me, not because of Alex’s reaction but because he is the “cavity king”. Back in 2010 he had to be put under so he could have 4 crowns put in, the anesthesia was super scary for us, thankfully Alex did great, no regression, no bad after effects nothing. 6 months ago when I took him in to see his dentist she told us he had about 7-8 cavities once again, I almost about fell backwards when she said it. So today’s meeting was  to see if they had gotten worst or had stayed the same. 6 months ago I also asked Alex’s homeopath for a remedy to see if we could stop the teeth from getting worse, this is where Kreosotum 6C come in. I gave this to Alex on and off daily  to stop the tooth decay and folks I think it worked!!! Alex’s cavities have stayed the same and nothing has gotten bad nor does Alex need crowns or any work done, everything is ok! One less thing for this momma to worry about, one less worry for me.

I have to say this week was a successful week, Alex’s teachers and therapist are working with us, Alex’s teeth are good, we will start the Varicella clearing next week again which I am sure will bring us more healing, Tuberculinum (wet dose) is helping him stay asleep, all is good at the Partida house, amen.

my kids, their health, their smiles, being their Mommy!

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.