The monsters

"I'm friends with the monsters under my bed,
get along with the voices inside of my head,
You're trying to save me
Stop wasting your breath
You think I'm crazy,
And that's not fair"

This song has a strong feeling in my heart for my son. To be only seven he already battles depression and anxiety and most days he hates himself. His inner struggles are bad. He says he is bad, he hates his brain, he hates that everything that he does he can't control and it frustrates him.
This is his life. The meltdowns that look that like a two year olds temper tantrum, the difference is... it's not for attention, he can't control them and you can't stop them. He struggles to make sense of his world, his self. He feels he let's people down and he feels so different from everyone else. He thinks no one likes him.
Today was hard.
Today he broke his brothers heart. 
Today he scared me more than I thought I could be.
I am not going to explain everything that happened because we need to work through this first. We need expert advice from his trusted and loved psychologist.  But he needs prayers for comfort and peace. He needs guidance and assurance that everything will be ok in his world.
That's all I ask. He's only seven and shouldn't have to feel this way about himself. My heart needs some comfort. My mommy heart is breaking for my sweet boy.  I can't explain how hard it is to watch him struggle with himself. I hate to watch him cry and tell me he doesn't want to be here. That he's a bad boy and no one loves him.
I feel helpless and sad. I want to help him, I want to make him see that he is wonderful and perfect. I couldn't love him anymore than I do now no mater what. No matter who he is or was or is going to be. I just want him to understand this. I need him to understand that he is loved and he is needed.

Eval

Last week I took Luke to his evaluation by his developmental behavior pediatrician, which was hard even though I already know half the struggles he has everyday. Seeing him struggle and not being able to help him is something no parent wants to watch.

 

We know Luke struggles everyday with having global dyspraxia, sensory processing disorder, adhd-combined type, dyslexia, dysgraphia and some more but with all these there are so many aspects that we don't understand still. There really is no telling what is going on inside his head at any time, and one minute he can be the sweetest most caring little boy then like a flip of a switch he is in full meltdown mode and I am left to figure out why.

 

He constantly tells himself he is horrible or he can't do anything right, that he is a bad boy and it takes everything I have to try and convince him that IS wonderful. But then just the simple act of telling him to stop doing something ends us back in the battle field again. He can't control his brain from thinking that every time he makes a mistake he is failing.

 

So the intent of this evaluation was to help us figure out exactly what is going on inside his head. Many people have told me that he shows a lot of Autistic tendencies and that he is probably on the spectrum somewhere. And yes I can see those characteristics in certain things he does,

-he has always lined up his toys, and color coordinated his cars and blocks.

-he has sensory processing disorder, which can also be a disorder all by itself but also a trademark of autism

-he has developmental delays

-he toe walks

-he will sit for hours engaged in an activity that most kids would be bored with

-he HAS to have his alone time

-his meltdowns are out of control

I could honestly go on and on about all the symptoms he portrays but really all I want our ways to help him. If he has autism or something else going on, he just needs me to understand him and be able to help him.

 

This evaluation was not much different than his pycho-educational evaluation he had back in May 2013 for school. But even after being in developmental kindergarten for half the school year already, he still struggles in areas that should be so simple. And it is heart breaking.

He was asked to time of day it was.. not like the clock time but like is it morning, afternoon or night, and it took several attempts and lots of extra clues for him to figure it out. He was asked what his last name was, he knows but he has to say his whole name to get out the last name and he couldn't write it when asked. He actually couldn't even write his alphabet, the only word he still only knows how to write from memory is his first name. He also had to imitate the doctor with simple hand movements which proved to be a greater task.

 

And I'm not writing this to tell you all the things he can't do, but for an almost 7 year old who has been in school since he was 2 1/2, was in pre k twice and now in a developmental kindergarten with only 4 other kids it is hard to cope with.

I KNOW he is smart and I want him to succeed, I HATE that he has to struggle to do so. He gets so frustrated at himself and he gives up so easily. So I really hope this evaluation will give me some insight on ways to help him. But I do have to wait till Wednesday to find out.

Christmas traditions

I have always loved Christmas time, and when I had kids I thought of all the family traditions this season would bring. All the hype, the decorating, the cookie baking, seeing Santa, shopping.

I can think back to the first couple of Christmas' and recall they were smooth, Luke was only 2 when Zach was born and our first family of four Christmas was great. Then Zach got sick and the whole world changed. Zach was in and out of the hospital so much. His entire 2nd year of life was basically inpatient and every holiday was spent in a hospital bed. Not the family traditions I had planned on sharing at all. 

 

And now even though he is home from the hospital stays we face new challenges with both of them and all the festivities. Now I face the holidays head on with dyspraxia, ADHD, SPD, and many other challenges.

Going to parties and loud stores is too much, seeing Santa is just impossible, shopping is a complete no go with kids and baking cookies involves getting messy, which is not good.

 

All of the traditions I dreamt of and thought were what I wanted and what was important to my family, my kids, have been replaced. I have learned that my kids are special and what makes them special is the way they see and feel the world.

 

And our Christmas traditions are now made around them.

 

-Walking for Make a Wish under the Christmas lights of Tanglewood because Zach was wish kid

-Drinking warm chocolate (because temperature is a Big Deal) with whipped cream, eating popcorn and watching Christmas Scooby Doo

-Watching Santa on TV and cutting out magazine pictures to make our lists (we can't write words yet)
-Finding the Elf on the shelf and telling him what they want from Santa (because Santa is scary in person)

 

I look at other families and wonder what it's like to be able to stand in line and wait for Santa. I always think it would be nice to have those pictures. But wondering and wishing for the normalcy for my kids doesn't make me love our Christmas time any less.

The season is so much more than those family traditions and the perfect gifts

For me, its about how far we have come this year. How my 6 year old couldn't even write his name 10 months ago but now can sign the Christmas cards. How this year, they love Christmas music and want it played all the time. 

Its about them decorating the Christmas tree, and not thinking how all the ornaments are cluttered together and how there are more candy canes than lights on the tree. 

Its looking at the tree and seeing the most beautiful tree in the world, how its perfect in my eyes. 

And yes it does look like a 4 and 6 year old decorated it,

but I would never want it to look any other way.

 

When Christmas day comes and my boys wake up to find that Santa has came, and their smiles light up the room, that's how I know its worth it. 

Having a child with special needs is hard and challenging and sometimes all you do is wish for the normal. But then realize that to you they are perfect and no amount of normal could change that.  

And even though I don't have the family traditions I thought I wanted, I have the traditions I love and cherish and wouldn't change for anything.




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On your way...

I am so proud of you. 

My miracle baby that came into this world 8 weeks too soon, you have just finished your first week of Kindergarten. I feared these days. With all your struggles and your differences, the days of sending you off in the care of others and me not by your side to hold your hand and say it's ok. You are growing up and I don't know what your future brings but I am so proud of you for where you are. 

You amaze me everyday. I saw you kick your legs on the swing yesterday, that is such a big step! And today your teacher told me that you played in PE! It's the little things that make me proud. You will never have to win awards or come in first place to amaze me. I find amazement in the things that you are getting better at, the button that you couldn't work yesterday but today you got it. The letters that I found you wrote on a piece of paper all by yourself, and the shoes that you put on and got them on the right feet. 

You are a miracle and you will accomplish great things. 

I am so proud of you. 

Lucas birth til Kindergarten in pictures-

Slideshow customized with Smilebox

Comparing him

I want the very best for him and I want him to succeed in everything and to be like other kids his age.

I think that is the hardest part for me, He is not like other kids, but it so hard to not compare. It's frustrating to see classmates of his or friends' kids succeed in things way before my son. I feel like a bad parent or failure because my son can't tie his shoes, can't ride a bike, that he doesn't know his ABC's. And it's hard to explain to other parents when they ask, is he in kindergarten? how is school for him? how old is he? because you know they are asking to compare...

"No he hasn't started kindergarten, he wasn't ready and quite frankly, he isn't ready now. How is school for him?- great question, school is HARD, he can't concentrate, he can't sit still. His friends are writing notes, and reading.. he knows, he sees what others can do.. he knows what he can't. And it frustrates him, it saddens him. And he won't tell you, but he tells me...he is embarrassed for others to see his struggles." And it is not fair!!

He is 6 years old and has no idea what the world will bring. He has an imagination that soars and can build a 5 star building with any objects you give him. He will be my engineer, my architect. But honestly he wants to be a doctor. He always has since his baby brother was sick. I can remember the day I found out, I walked into his pre k classroom to find his drawing of himself that said "I want to be a doctor to make my brother better"

That is the quality that makes him special. His heart is far bigger than his classmates, he excels in loving others. No it doesn't matter that he is 6 and doesn't know his alphabet, or how to write words or how to read. He will get there, he will learn all the things that his classmates know. What matters is that he will love everyone, he will know that everyone has different challenges they face but that we are all special.

I am learning to not compare him, which is hard but because I know what and why he is special and I know that he isn't like everyone else and will never be like anyone else.. because he is him and he is perfect.

God knows I am thankful

I think I heard "there is nothing to do" and "I'm bored" a thousand times this morning... all before 10 am. And unfortunately when your child has ADHD and dyspraxia there mind can't be still, they get easily frustrated over the little things and then you have meltdowns.

We have had about three meltdowns so far this morning and that's when we decided to pack a picnic and head to the park for some much needed sunshine and energy release.

I think I can relate having a hyperactive dyspraxic child is like having a high energy puppy... if you leave a puppy inside all day with nothing to do, you come home to a destroyed house, everything chewed up and a very unhappy you. That's how Lucas is, if he doesn't have something to do to keep his mind busy, he gets frustrated and has meltdowns. 

I could have easily gotten mad at his behavior this morning, put him in his room and just listened to his whining all day... but I am learning to go with it. I am learning that his behavior comes from a source out of our hands and out of his control and so therefor punishing him for it is unfair.

Instead I have to find ways to occupy him and a way for him to release his energy and emotions.

So today I knew he needed time outside to play. 

God gave us these special boys for a reason, and everyday I am learning more and more about what helps them everday. And of course everyday is different but I am so lucky to have two beautiful boys, sometimes I take that for granted and some days it feels like I am living in a war zone of meltdowns and constant brother fighting. But at the end of the day when I am thanking God for my day and my wonderful family, I realize just how special my boys are and that they were given to us to help us more than we need to help them.

Drugging Einstein

I haven't written in a while but last night I was telling Luke that Albert Einstein was dyslexic and yet he was one of the smartest people known and he came up with brilliant ideas. And then today I ran across this article and it seemed so fitting. So I wanted to share.... it definitely makes you wonder.


Drugging Einstein, an article on ADD and Dyslexia by S Conde
October 27th, 2012

What if ADD and dyslexia are not disabilities? What if they are actually abilities and only labeled as such because the “normal” (neuro-typical) brain is in greater abundance and simply does not understand the spatial nature of a dyslexic mind nor speed of a brain with ADD?

ADD’ers and dyslexics are non-linear, intuitive learners who process information a thousand (some say thousands) of times faster than a neuro-typical person, because they think in images rather than words. (One of the biggest difficulties with dyslexia where reading is concerned is that they have trouble processing words that do not relate to an image. Is, or, the, and, but, if…are often substituted for each other as they have no picture associated with them.) People with ADD and dyslexia are both right brained thinkers who can easily establish complex connections and patterns without much conscious effort at all. Despite popular belief, people with ADD are actually able to focus intensely on a subject for great lengths of time, IF they find the subject compelling enough to shut out the distractions they are acutely aware of, all around them.

ADD and dyslexia are not diseases, they are differences in the way the brain processes information and the parts of the brain used to process information. People with ADD and dyslexia are not sick, their brains just work differently. A psychiatrist explained it to me this way. The ADD brain is actually older, from an evolutionary standpoint, than the neuro-typical brain. When we were hunter gatherers the ADD brain was necessary for survival, noticing everything at once, hyper alert, able to zero in on and focus on a singular detail in the environment. When we moved as a species from hunting to agriculture, the executive functions of the brain began to evolve. Executive functions deal with planning, verbal reasoning, inhibition, etc. The linear thinking mind became a distinct advantage in planning crop planting times and rotations for example.

It seems to me, the neuro-typical brain is in greater abundance, because it was genetically beneficial…at the time. But, what about now? Is evolution beginning to favor the older right thinking brain?

Computers “learn” the same way people with ADD and dyslexia learn, intuitively. In addition, dyslexics are able to construct three dimensional images in their heads. These abilities make both the ADD’er and the dyslexic uncommonly good with computers. As computers and visual communication become more and more relevant in our fast paced world, will dyslexics and people with ADD have a leg up?

Further, is the ADD / dyslexic mind closer to knowing itself? Free of inhibition, to a greater degree than the neuro-typical mind, and the nay saying rationale of executive function, is the right thinking brain more open to greater truths about itself and the world at large?

I was reading a friend’s blog the other day and stumbled across this quote by Jung relating to dreams:

The evolutionary stratification of the psyche is more clearly discernible in the dream than in the conscious mind. In the dream the psyche speaks in images, and gives expression to instincts that derive from the primitive levels of nature. Therefore, through the assimilation of unconscious contents, the momentary life of consciousness can once more be brought into harmony with the law of nature…and the person can be led back to the natural law of his own being. JUNG – CW 16 para 351

According to Jung, the person with ADD / dyslexia speaks the same language as the human psyche. Wouldn’t it be easier to “be led back to the natural law” if we understood the language in which the law was written?

We are forever told to “live in the now” in order to be happy. “Now” is the default home of the ADD / dyslexic mind. Past and future are rather abstract concepts.

In the interest of full disclosure, I am married to a man who can close his eyes and picture a room in three dimensions, then spin it around in his mind’s eye and inspect it from different angles. I have given birth to a child who argued with his sixth grade teacher that the cardinal directions of Earth are meaningless in outer space, (for which he was punished and belittled in front of his classmates). Our two other children are like me, with higher verbal function, but disorganized and with a propensity for tuning out the world around us, and becoming lost in our own thoughts. All of us in this house are drawn to the arts, and all of us have ADD and dyslexia, to greater or lesser extents. Two of us were labeled “gifted”, one of us slipped through the cracks completely, and the other two were labeled “learning disabled”. Do we sound learning disabled to you?

The educational system has failed us. All of us really, right brainers and neuro-typicals alike. It is particularly difficult though, for those who simply can not obey the commands of sit down and shut up. Is this the best way to teach our children anyway, or is an interactive learning experience better for them?

I’d like to share with you a list of people known to have ADD and or dyslexia. What would the world be like had we medicated them in an effort to make them the same as everyone else? What if we had drugged them so that they might focus on what society deemed important? What if they had not been allowed to look inside their own magnificent heads and explore what interested them?

Albert Einstein, Pablo Picasso, F. Scott Fitzgerald, Winston Churchill, Edgar Allen Poe, John F. Kennedy, Vincent Van Gogh, Bill Gates, Walt Disney, Benjamin Franklin, Malcolm Forbes, Richard Branson, Thomas Edison, Orville and Wilbur Wright, Wolfgang Amadeus Mozart, Salvador Dali, Ernest Hemingway, Ted Turner, Thomas Jefferson, Leonardo Da Vinci, Stephen Hawking, Leo Tolstoy, and Louis Pasteur to name but a few. Do they strike you as learning disabled? Abnormal…in a negative sense?

I am left thinking of Kurt Vonnegut’s short story “Harrison Bergeron”:

I think I’d make a good Handicapper General. Good as anybody else, said George. Who knows better’n I do what normal is? said Hazel.

Normal, abnormal, able, disabled? You tell me.

A look inside Luke's brain

 These are some graphics I found courtesy of The dyspraxia foundation, that illustrate how some LD's affect the brain.

Luke has dyspraxia, dyslexia, dysgraphia, adhd and spd.

Updated Us... very long overdue

 

 I am a stay at home mom to two very special boys, have been married to my husband for 10 years this November. Our family has gone through a lot these past couple of years with our boys and things are still coming into perspective. This blog is just a little glimpse into our everyday lives raising 2 special needs boys and also helping bring awareness to many rare disorders and very special kids.
Now about us…

Thing 1 (Lucas)- is a new 6 year old going on 18, who knows everything and always has to have the last word. He has been diagnosed with ADHD combined type, oral and developmental dyspraxia, fine motor and gross motor delays, phonological processing disorder, dyslexia, dysgraphia and receives speech, OT and PT.
He was born at 32 weeks via emergency c-section, he was in distress, having the cord wrapped around his neck preventing blood supply to his brain. We are very lucky to have him, he would not have made it full term and we are very grateful for our doctors for finding out.
Thing 1 is very smart, very creative, and his imagination is far greater than I could imagine. He is truly one of a kind.

 Thing 2 (Zach)- is our 4 year old love muffin, he is a momma’s boy to every extent. He spent a lot of his early years in and out of hospitals trying to survive. He has been through feeding tubes, central lines, iv nutrition, special formulas, tests, tests and more tests, and more surgeries than I can list. But through it all, he remained a strong willed, happy little boy who loves Superman.
No one really knows a diagnosis for him, we know he has Eosiniphillic Esophagitis, food allergies, and some autonomic dysfunctions (mild- mainly sensitive to heat and flushing when over stimulated)

 

For those that have followed our story from day one- thank you from the bottom of our hearts believing in us and keeping us in your prayers. We have made it, our boys are doing good, our family is good, and the past is behind us. Our boys are thriving and growing.

Through all of the crazy mess over the past year we have kept our faith in God and knew he would bring us through and we will continue to walk the path he has for us.