What you Don’t Know……

When my hubby and I met he was in the military and so our two oldest children were cared for (during the first half of their lives  by military doctors.  What many don’t know about military doctors is that you don’t get to choose which doctor you want to see, the doctors are usually not very caring they seem to only be there out of a sense of obligation. What you don’t know is that a pediatrician is not a pediatrician .what do I mean by that. Your child could be seen by doctor that got their speciality in OB or urology not pediatrics which means they really don’t want to be there because fooling with kids wasn’t what they wanted but the duty station they got stuck with.

The military system of doctors at the time we were there were solely about quick fixes. You had a headache 800mg Motrin, your child had a fever Motrin, you looked sick or feel a bit under the weather, Motrin with an antibiotic chaser.  Nothing about the military medical profession stated “let’s find out what’s going on” there was no diagnosing involved it was more of a lets get you out of here so I can get you to the next patient and go home.

People wonder why I an African American woman would be against this universal health bill, because if our government can’t adequately take care of our troops and their families I don’t want any part of it. I will move off the grid before I allowed the government to view my every health move and dictate where it should go.

Just to give you an idea how ratchett (for those that don’t know ratchett is the ‘hood meaning  for the word  bad to the 10th power) the doctors and the medical system we experienced were.

At our last duty station in Maine our kids pediatrician was a Dr. Robert Luhn and boy oh boy, he did a great job at making sure I felt un-empowered.  Our oldest had double reoccurring ear infections and his solution antibiotics, when one didn’t work he mixed two, all the while giving him vaccinations on top of it.  When I went to him about Marcus’ development stating “something was off and that the teachers saw something” he stated and I quote “You are just being an over zealous mom because you daughter was diagnosed, there’s nothing wrong with him.” and end scene. Then he told me that the wheezing I heard wasn’t wheezing at all.  At that point I was mad as hell so, I began to research leaving the military doctors and chosing outside doctors for me and the kids, my husband had to be subjected to their treatment because when you’re in the military you are “their” property.  Anyways, we got out and I found a doctor on the outside that was a little more open and easy to talk to. I also took my son to get tested by the state of Maine. The new doctor found asthma and the state testing found delays.

Well those that know me know that I wrote a letter as only I can that  was full of shade (the ‘hood way of  saying that I was nasty but in an underhanded way) and facts.  They nicely filed it away in my kids medical files. I found out years after my hubby ‘broke out’ that they were harassing him at work about the number of times that I had to take our son to the doctor! Asking him to tell me to reduce the number of times that I went to the clinic!  I find that to be truly disturbing.

My hat goes off and my heart goes out to all of the families still serving “the man” your jobs nor journeys are easy.  It’s hell getting services when you move from state to state or country to country.  Receiving adequate care is almost a joke, because the government’s view on their health is a pop a pill.

So, the next time you see a service member or their family shake their hand, take your hat off, say thank you, because their sacrifice  is more than you could ever imagine in your normal civilian lives. No they don’t have it easier because the military pays for their moves or gives them a food stipend or housing.

Wishing you Love Health & Wellness

Charmaine

*PS if anyone of my readers is current US military could you tell me if the medical treatment has changed, I’m curious, also has diagnosing and treating autism or any other different ability become better”

 

Learning

This morning I’m hyperventilating less but I’m still in deep thought. So this morning I’m going to share a bit further, 1. because it’s therapeutic to me and 2. because someone else might be feeling the same or similarly.

I am in a class called Imminent Abundance, it’s a great class to help me deal with some mess that I hadn’t dealt with at all or just dealt with on the surface.  One of the exercises they had you do was write down something that has been holding you back (i think) but here’s the point. I have this feeling that no one wants to help me. Now let me elaborate on this one.  I have and have always had this feeling and experience that no one want’s to help you or will help you for nothing. That if they do help you they will either want:1. something bigger in return, 2. they will judge you for needing help, 3. they will demean or diminish your situation for you needing help. These have been my experiences rather real or perceived they have been my experiences.

I have a VERY hard time opening up and sharing especially if I need help because I am afraid of what will be thought of me. Here is some of my self talk, “Damn she don’t work what she need a break for” “You’ve been home all day what do you mean you need help with housework ain’t this your job” “How could you put your kids in that situation, God wouldn’t want you to starve stop tithing that money going to the preacher” Those are just some of the thoughts going on in my head.  I don’t ask for help because it’s hard, it’s uncomfortable I was taught that asking for help is a sign of weakness and not a sign of strength. You see it takes A LOT of courage to ask someone for assistance. I always hate the fact that it feels like I’m begging and the connotation that our society have placed on people that seek assistance in any form especially people that beg or are perceived to be beggars is horrible. So I don’t ask. Often times I’d rather suffer alone than run the risk of being ridiculed or talked about.

My ego is having the damnest time moving beyond what others think about me especially those that are close. (Damn the thought of that hurts and I wish I could go to church this morning not so I can see the preacher jump up and down or hop and bop to the choir but there is something about being in a place that is loving, accepting and open that fills you up and my cup of love needs to be filled because I only have a few drops left. )  So I play the role that they expect me to play, I work so hard at being who I think they want me to be and not who I know I am. That is so over, that takes way more energy than I can give right now. I have my children’s well being and well fare as well as my own, so don’t have time to nourish anyone else. It’s not that I won’t help anyone else but I’m not compromising me to do it.

Changes are coming with me, I can’t control or change what anyone else feels, does or how they act and that’s a wonderful feeling knowing that the Ultimate Creator gave me the free reign to control MY destiny.  It’s so funny how I used to always love to control, sometimes I slip back because it’s so intoxicating for me to have that perceived power of being able to control someone or something else but I always have to pull my ego back and get it together.

This blog will mainly still be about my kids and their journey but sometimes with a bit of me thrown in (see it’s called Beyond X and Y for a reason) I feel that if I open myself in this way that potentially I can deal with my demons and maybe just maybe I’m not alone and I’m helping someone else realize that they aren’t alone either.

So if my posts resonate with you great, if not great if you know of someone it will help pass the link along.

Wishing you Love, Peace and Wellness

Charmaine

Trust

There is a book that I definitely have on my reading radar as soon as I get back home by Stephen Covey called “The Speed of Trust”.  Lately I have dissolved trust and have had my trust broken.  I did what most humans do when someone has betrayed their trust is I pointed outward and said “How Dare They” but then after many tears and anger I turned inward and said “Damn girl what type of trust funk are you giving out” and I really didn’t like the answer as I didn’t think I was that bad but in light of what has happened to me over the past couple of days I really had to look at me.

When people point out what they see in you or what they perceive that they see in you it hurts especially if you’re like me and you’ve been trying REALLY hard to allow God to lead you and to be a positive leading force it’s really hard to keep trying when someone brings out every negative thing you’ve done in the past, present and potential future.

Over the past few days my loyalty, love for my children, and everything I’m trying to stand for now has been questioned.  At one point I was ready to give up, why should I try to better myself if I wasn’t doing a good job. If I wasn’t doing any good for myself and my family or the world what was I trying to change for? Why did I waste all that time praying and meditating? Why did I waste that time tithing? Why did I waste that time going to church and fellowshiping? Why did I start giving a damn about anyone other than me? Why did I start this journey if I was still being perceived as the same evil, selfish, complaining bitch that I was?

Right now writing how I feel still is twisting my stomach into knots and making my eyes water. 

Then I remember, “Your perception of me is not my problem.”  Then I remember, “The Devil is a Lie” Then I remember “Rome was not built or destroyed overnight so I am not going to make a full 180 change in less than 6 months” Then I remembered that I’m not perfect, that I am trying to reverse DECADES of mess.  I’m allowed to fall, stumble, and bust my knees. I don’t have to live up to anyone’s expectations but my own.

In saying all of this it’s still hard because I have new self talk to remove just as I was deleting some old fears and mindsets new ones came in.  So I have a lot more work to do. Writing this is making me want to bust into tears but I’m in a room full of women and the last thing I need is a Q&A session because as much as I want to trust there are certain people that I can no longer trust. They were on their second opportunity and I’m done time to make distance and keep it moving.  

So this is going to be a week of more praying and meditating and reading and affirmations because I can’t go back to where I was. I tried to become that “tough bitch”  again and because of some of the things that I’ve implemented in my life it doesn’t feel right. Wow, just in typing that I realized that I have changed some that I am able to realize behaviors that aren’t conducive to my growth. So I forgive but I don’t forget. I am working hard to not hold a  grudge as I HAVE accept my role that I played in this whole drama unfolding.  

Lesson for the day, what is in your life? Is it pretty, drama free, love? Or is it pain, tears, self doubt, lack of trust? What is it.  I don’t argue with people anymore not because I don’t like confrontation but because I’d rather be happy and at peace than right.  And 9.5 times out of 10 when someone is on 100 trying to prove their point to you it doesn’t matter what you say you are always what they say you are.

The past few months have really opened up my eyes on how other people perceive me and it’s kinda sad. How I have allowed others to treat me in sake of “keeping peace” and “keeping up a facade” makes me hyperventilate and sad.   So I’m now on a mission to make changes. The enemy, my ego is going to lose this one, I don’t care what you think of me because I’m going to do my best everyday to be a better me and if I don’t meet your expectations today guess what….too damn bad.  Stop looking at me to be your main source of love, happiness, or stability because the only person I’m relying on now is God and me.  I am going to allow God and the Universe to lead me. If it so happens that I hurt some feelings unintentionally oh well. I’m sick and tired of apologizing for being me. Especially when I haven’t said or done anything to anyone that is going to end their life or damage them in any way. 

I have A LOT to work out with me I know that. 

Tip for the day, don’t feel the need to regurgitate someone else’s faults or down falls unless it is truly going to benefit a situation. Not just because it’s a trait you don’t like. Most of us working on our life’s don’t need your “help” (put downs) we already know that there are some areas that we need work on.  Also, not everything someone state is a point of complaining maybe it’s a cry for help, stop thinking that the mother stating that her kids are getting on her nerves doesn’t appreciate or isn’t thankful for them, maybe it means she needs a break.  Stop telling stay at home moms, “what you complaining for at least you don’t have to go to work everyday” Here’s the difference genius, you get a weekend where you bosses can’t come to your house and demand your presence. Laundry NEVER ends, feeding kids NEVER ends our jobs don’t have an off button, time clock punchout, or holidays. 

I love my kids more than life itself, I would lay down my life to make them better and I think that’s what hurt me the most the fact that I work so hard with them and I am perceived as a mom that doesn’t give a damn, a mom that hates her kids. Wow. 

Trust, who do I trust? God, I trust the Holy Spirit and the Universe to lead me to where I need to be.  I have a small, small, small group of true friends (3) that I know will tell me the truth about myself with degrading me or judging me or spreading my business.

I don’t know where my life is going gotta map out where I think I want to be, because where I thought I wanted to be, I’m not sure now. So I need some time to get guidance to figure this out.

Wishing you Love Peace and Healing

Charmaine

Be True to yourself and your path of love and it will all work out.  The universe rewards the faithful.

Things I’m learning

Today I went to a lovely meeting with a group of beautiful moms that also have a child or children that fit somewhere on the autism spectrum   It was great to hear of the stories of the other ladies to know that, I’m not alone and that I’m not doing all I’m doing for nothing.

Some things I learned today that I need to do EVERYTHING on the protocol.  That the bonuses that we are currently seeing will be doubled, tripled if I did everything on the protocol.  Also, I need to start doing video of the kids so that there can be a visual diary of what is going on and how they are progressing, because sometimes words just don’t cut it.

So I have created a YouTube channel where I will be housing all of our videos because I am not yet ready to pay Word Press $99.

Marcus, Jr has had a seizure today and one yesterday. I thought it had to do with the number of apples he ate, but tonight I noticed something that I noticed last night that he has them almost immediately following his castor oil wrap.  So tomorrow we’ll try again and see what happens.  He will also be receiving a clay bath and I’ll try to give him a Epsom Salt bath also as he enjoys both.

Today Marcus, Jr was very sweet today we worked on him using his language when asking for things.  You could like at him and tell that the wheels in his head where turning as he was trying to have conversation and make his request known.

So, today was a great day despite the seizure and tomorrow will be even better as I have to wrap our week up with a post and hopefully a YouTube video.

Love and Blessings

Charmaine

Frustrations, Angst and Confusion

So today on Facebook one of the pages I follow (RespectABILITY Law Center) posts many interesting tips and articles.  Well today they posted an article about a 15 year old NY girl that cognitive delays being placed in a room full of  juvenile delinquents and gang raped. Now, where the administration was who knows I mean, damn, really?

I have enough trouble with the school keeping my children from getting bit by the same child every year! So how in God’s name am I as a mom to expect them to watch out for them and keep them from being molested, raped, beaten, or in their case all three?  Then come to find out that Grosse Pointe Public Schools the stellar, upstanding, top notch school they are also has the same issue.  That any student that doesn’t fit their cookie cutter mold gets shipped to Special Services, so in essence you could have a kid that has severe mental, violence or a combination mixed either with parents that don’t care or don’t know how to handle that child along with a school district who just wants to throw kids in a room and get paid and that could equal disaster.

I think after my son’s last biting episode I am a bit jaded about the district that I swallowed the “red pill” on.  This school is filled with more smoke screens and illusions than a David Copperfield show. When we moved back to MI from ME an old acquaintance of ours told us how Wonderful GPPS was that the teachers where great, blah blah blah.  I should have followed my intuition, my daughter when she entered this school district was at grade level..GRADE LEVEL! Now all of a sudden she’s not able to grasp 3rd grade math concepts? There was so much I didn’t know then because Maine had done all IEP work for me, as there they TRULY cared about the kids and their succession. They wanted to push and not hold them back. I don’t just blame teachers and administration I blame myself, which is why I know all this special education stuff now.

So, I’m not happy with Grosse Pointe Public Schools, if I had a concrete plan I would pull my kids out now. It’s interesting how Special Education is the “cash cow” for Grosse Pointe yet we don’t have tutoring programs, we don’t have anything extra that will help our children succeed like general education. It’s like regular instruction should be enough.  And they don’t want to place any of the kids in ESY because they claim that the criteria is “regression/recoupment” which that is not the only criteria that determines ESY and legally you don’t need to show regression/recoupment in order to place a child in ESY but that’s another story for another time.

The special education system is broken at best.  In the case of my district, you have kids of varying disabilities and grade levels often in one classroom, while you have a teacher splintered  trying to teach everyone on their own level not only does he or she have multiple different abilities in the room but kids from different grades and aides that are also over worked and in the case of our district way underpaid. You have parents trying to just get the district to provide FAPE (free appropriate public eduation) on a consistent basis, forget extras we’re just trying to get what is required by law.

If what is going on in special education was going on in general education, there would surely be a riot.  It’s so weird that when it comes to kids the governments seem to have their hands tied and eyes covered.

I don’t know maybe I’m over-reacting or maybe I’ve been swallowing the red pill (Matrix reference) for too long. But in any case something needs to be done about our special education system.  Laws aren’t being followed and kids are getting left behind although in our world they continue to advance them regardless of whether or not they have met their IEP goals for that year.

How is your child doing in school? How would you rate your child’s education? Would you recommend your district to anyone else, or if you could move or drive your child elsewhere would you? Sometimes it’s not worth the fight, I don’t have time to wait until my kids sink further and further into the abyss of falling socially and academically behind.

How are my kids doing in school? Not bad but not good. How would I rate my child’s education? I rate it a 3 out of a 5. Would I recommend my district to anyone else? No, Grosse Pointe Public School is not Special Education friendly, now if you have a slew of neuro-typicals it’s the district for you, unless you end up at Poupard which has the highest number of African American Children then you get the bottom of the barrel (that too is a different story). 

Use my random thought to re-evaluate your child’s current educations situation be they in general education or special education and ask yourself, am I happy with the results. Take a deep look back over all of their report cards, assessments, IEP’s, progress reports, just look at everything   If you are happy great if not then changes need to be made and either you need to try to work with teachers and administrators or leave and find another school to attend (which is a lot easier than you think nowadays) but do something.

Love and Blessings,

Charmaine

The Article that started this blog

Questions and Answers

As this year closes, it closes with more questions than answers.  For me that’s OK because that is more reading I get to do, more information I get to learn and more I get to share with parents that I meet.

I think that we in the special needs community often separate ourselves from the rest of the world not because we have to but, because we feel as though we have to and that is something we need to stop doing.  We need to stop saying how people don’t understand us and our journey when we won’t explain it to them or even invite them into our world. We have to be that change, we have to be the driving force that gets people to understand whatever our loved one’s disability is.  We are the one’s that have to get people to understand that every person on the Spectrum is not like “Rain Man” and that every person with Down’s is not “Corky” from Life Goes On. We need to get people to see beyond the stereotype placed out for the viewing public.

So as I type that I think what have I done in my community to change those perceptions of not only myself but of others. Have I attempted to learn more about other disabilities or have I retreated into my own world?  You see those of us that have public forums be it PTO presidents, PAC presidents or just bloggers we have a responsibility to think outside of the box, to break barriers and to inform the general public.

Now, to be honest I haven’t done much outside of Autism and that worries me that I am sticking myself into a box. I am starting to break some barriers and I’m trying to think outside of the box. There is so much that I want to accomplish next year and I want to do it well. I want to truly be a servant for special needs families in my area.  There is such a need for communication, unity and education in my area, we are so divided.  I’m sure we have some of the same problems that are going on all over this great country in regards to special education and care.  But in my utopia I would love for us parents to truly get together and support one another no matter the differences. To truly know that by me helping you I am not only helping me but helping the future of our community.

So for 2013 I have some huge plans, because I would like to connect with other parents on a more personal level and for all of us to exchange ideas, information and support at a place other than our district PAC meetings.  I want for us to be able to assemble just to connect and support, not because we’re rallying about something.

There are so many changes coming I know I’m up for the challenge are you?

Love and Blessings,

Charmaine

"Houston we have a Problem"

So the school year is over and my kiddos are home with me. On the last day of school I said to my kids A.I. aide (Autiscally Impaired), “you all must be said that Jai is leaving being she was the only girl and since girls aren’t that prevalent on the spectrum who knows when you’ll get another one” The answer she gave me almost made me drop to my knees. She said, “oh we’re getting TWO little girls in next fall” I thought to myself WTH is going on??!!! When my daughter was diagnosed with  PDD- NOS back in 2003 hearing about a girl on the spectrum was rare to say the least. Jai has always been the only girl. Girls on the spectrum are like an anomolay.

If this doesn’t prove that something more is going on other than “autism” I don’t know what will do it for you. This is not text book autism that we’re messing with people this is something more sinister. If the medical profession would open their eyes and see maybe more children would be functioning versus being zombies. Maybe that’s what they want is a generation of zombies, kids hopped up on pharmaceutical, mind altering drugs. Maybe that’s what these organizations want, they claim they are all for finding a cure but there is a cure right in their face. Several bold doctors have already paved the way, why aren’t they mowing out the rest of the path? It makes one wonder, are they afraid of the money that they will lose out on if this is not truly autism (and trust me people for many of these kids it’s not)? What interests me is that many of these organizations only tout speech, occupational and physical therapy as your main line of defense.

Here’s my other issue how does a disorder go from affecting 1 and 10,000 to 1 and 88, damn that’s a problem. This is not genetic or developmental this is viral. I used to think, wow because my kids had it and other children in my family had it that it must be genetic in some way. Now I know how untrue that is.

Hearing what I have heard has truly disturbed me, I can’t be quiet or sit still. I can’t wait really now because I have a feeling that everyone is waiting to see what my children do. So the summer is not a time of rest for us. I will continue to update with progress and changes.

Until Next Time,
Blessings and Recovery
The Fuller’s

Changes

Hello All,

There will be some changes that will be made to my blog. If you follow you will immediately notice that I have taken out the word Autism from my blog title. This is due to me reading (actually still reading) the book “The Myth of Autism” by Dr. Michael Goldberg.  He basically states that what our children are dealing with is not Autism but a Neuro Immune disorder, and for me and my kids what he is saying is making sense.

We will be starting Dr. Goldberg’s protocol in May 2012 with both children. My blog will center around us going through this protocol with the assistance of our pediatrician and everything surrounding it.

So, thanks for the follow.

Blessings and Recovery,

The Fuller’s

What Do I Know?

So today I ponder. What would my children’s life be like if I had no hope? What would it be like if I believed all of the websites, doctors and research that said my children will always be like they were and will never recover? I shudder to think about that but sometimes I see something that makes me think about just that very concept.

Today, in my Internet search for something else I happened upon the show “The Talk” and I wanted to see if Holly Robinson Peete was still one of the hosts, and unfortunately she’s no longer on there because she was a great voice for Autism Awareness. Anyways going off track. So I end up on this quest to find out what some deem autism to be and what they think the prognosis is.

So I go to the HollyRod website first (because she fueled my journey for today) and I click on the Autism tab, and this is the definition that is given: “Autism is a lifelong, complex neurobiologial disorder for which there is currently no documented cure. It crosses a spectrum that ranges from relatively mild difficulties to extreme conditions involving severe language delay; repetitive and/or anti-social behavior, and even aggressive and/or self-injurious behavior. Symptoms of autism change across the life course. An autism diagnosis involves deficits in three core areas: social interaction, use of language, and behavior and interests. Researchers are scrambling to determine whether autism is linked to genetics, environment factors or a combination of both.”

 

Next I go to Autism Speaks and their definition is: “Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders(PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified), Asperger Syndrome, Rett Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.“

 

Finally, I went to the Autism Society of America and their definition is: “Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.”

 

Now in saying all of that I say this, in a round about way they all give the same definition for autism, and they all really won’t comment on what they think the causes are and they all say that there is no “known” cure. Now in saying that when you go onto each website and read further they do say that that there are treatments that will make life easier and that often times no one treatment will help that some children will require multiple treatments.

 

Both ASA and Autism Speaks give great information about the different types of treatments, biomedical and otherwise. Autism Speaks specifically gives out a great packet of information called The 100 Day Kit, and it helps parents navigate the first 100 days after the initial diagnosis. The HollyRod Foundation mainly offer support and assistance in the Greater Los Angeles area.

 

All of the above are great resources if you are just starting out on your Autism Journey, if you have been in the game for any length of time then the above sites will just frustrate you because it is often things that you have already know. But they are great starting points. At some point in your journey you’re going to have to go behind, speech, occupational, and physical therapy. At some point you’re going to have to push the envelope beyond what you feel comfortable with and do treatments that don’t fit into the box of conventional medicine. That’s if you want to do what the medical community considers impossible…..recover. Our kids can be recovered, it will get better if you don’t give up hope.

 

Wishing you Blessing and Recovery,

 

The Fuller’s