It can't rain all the time

One of the things I admire about my boys is their togetherness. They are 15 months apart so we refer to them as the twins. They are close without ever really actually playing together for obvious reasons.
The other day D told me , " I am the little brother but yet it's like I am the big brother." This melted my heart because he is exactly correct and he fills that role perfectly.

I  often see parents ask , "What do you tell the siblings about their autistic brother/sister?" The thing is there is no right or wrong way to do this. In our case we started when D was little, explaining that his brother was special. He was going to be different than other kids he would meet at school and that was ok. We were blessed because D turned out to be a very intelligent child and is mature for someone of his age. He would rather help someone who has a difficult time helping themselves. One year he came to me asking if he could start a toy drive for the children in a shelter. We did not get to do this because I just could not get the time to organize things for him but I will help my baby with that this year.

We have two kids who are developing in different ways yet they have this bond . There are times when I am running around like I am crazy getting things ready and  I will remember that there is something I forgot to do regarding Nathan. D will step in and say, " I got it mom." He has declared that one day he will be scientist and he will find the cure for Autism.  These are conclusions he has come to because he has this unconditional love for his brother. He could be bitter at us because we spend so much time trying to find ways to help him or adapting our lives for him but he isn't.  He's thoughtful because that is the way he was raised. We don't have alot of money and we live on a tight budget so we have never been that family who has money for vacations or going to theme parks. We do have togetherness and that to me is worth all of those superficial things people spend their money on. I am proud of my boys and their relationship. D looks after N and N looks at him like he hung the moon. There is a trust there that even I nor their father can touch.  Children sometimes see things that us as adults cannot.Sometimes there is a level of understanding between them that is unspoken.

The point I am trying to make here is that it begins with us as parents. Our children will only show empathy if we teach it to them.  Kids are taught by the example we set forth for them. There adults I know who will act like they are someone with special needs to get a laugh or worse they stare at someone like Nathan like he's an attraction. Then you see their children and it makes sense why they act the way they do.  You cannot really get mad at those people but you have to feel sorry for them because the kids never had a chance to see what a good example could be.  They could learn a thing or two from my boys and other children like them.

I do worry about what will happen to my boys when D goes off to college and starts a life of his own. I ask myself if they will always be this close. Will he forget about him? We are coming to terms with the fact that N might never leave us and that is something we will eventually have to consider. I do not feel it is fair of me as a parent to expect anything of D. He will eventually have his own life to live and I plan to allow him to do that. I can only hope that he and N will still remain close in some way.

and now I will end this with a song I love  from my youth which I feel describes the two of them :

You wouldn't like me when I'm angry

Why am I quoting , The Incredible Hulk? because for me that's what Autism is like. I know I promised that I would not make this a blog about all of the negative bits about Autism but I realized I cannot make that promise.


Today was not a very good day and it hasn't been for quite some time. There are days that N is a sweet loving boy who gives a lot of hugs, kisses and even just smiling a lot. Those characteristics once led his neurologist to suspect he might have Angelman's Syndrome vs Autism.  We had genetic testing done to rule that out. The results were No Angelman's   just plain ol' classic Autism.
Lately he has become unrecognizable at times, we jokingly refer to him as The Hulk. He starts out slow but then explodes. The cause is usually because he has not gotten his way or he is being "forced" to do things he does not want to.  We are such mean parents that we take our children to play outside so they can get sunshine but N would rather stay indoors. This would work out ok if we only had one child but we have 2 and I refuse to make our 2nd son go without. We also "force" him to take rides in the car so we can pick up supplies such as food. He hates the grocery store. I used to understand the weekends because the stores can be crowded but during the week they are usually pretty dead especially in the morning when we go. The thing is he throws tantrums  which usually result in self-injury, hitting others and throwing things. As I said above, he explodes.

Sometimes I worry that CPS will get called because there are unexplainable bruises on his arms, legs, sometimes his face is red because he has slapped himself. This is the ugly side of his condition. I don't like it and I am not going to pretend that it's normal.

We don't go out much as a couple because I feel guilty inflicting  that burden on others. I know we should but we are a strong team who manages to keep it together because we help each other. I have reached out to his doctor for assistance with this but her response is to give him more medication. One medication  Risperidone , which carries a long list of side-effects. No thanks. Insurance companies do  not always  cover the additional therapies that have been recommended . There are state mandates now but employers can opt out.  We do not have extra money laying around to pay for them ourselves, etc. It has become a living nightmare.

Being the person that I am, I don't give up easily. I will fight until the end for my son because he didn't ask for any of this. I keep going back in my mind to think of the things I may have done wrong during my pregnancy but that's not the case. No one can be blamed. It is what it is.

There is a light at the end of the tunnel and most recently we were notified that he has received the opportunity to receive biomedical treatments through a grant from Generation Rescue . We have not started these yet since he just got accepted but this could be the hope we need.  A chance to have N back even if he improves just a little.  We have to come up with a fraction of cost which is nothing compared to the quotes I was given when I researched these on my own.  We have set up page over at Go Fund Me and thanks to some gracious friends & family we have some of the costs covered.

That folks is why my hair is turning gray and why I smile more than I frown. I have learned to be strong.  I am not on medication although it has been prescribed and I have been diagnosed with Depression, Anxiety & PTSD (not due to the Autism) Despite all of this there is still hope. Sometimes that's all there is to hold onto.  

Thoughts

She's been challenged like Rocky to a match with life
Perseverance is her middle name. There is no storm
She cannot weather for she is small but tough
her smile is radiant , even when there is rain.

-Mr (me)

in my spare time I write. It's an outlet for daily trials which I face head on. Most people have no clue what is going on with me because I keep it at home. I smile even when I feel like crying. I laugh when I should probably take a moment to get a little angry. That's just not me. I laughed at my own wedding while saying my vows. I was nervous but happy and giddy at the same time. My cousin served as my best man. Yep I had him instead of a maid -of -honor because we are close and I could not imagine anyone else. After our wedding he mentioned my laughter and said, "That's maria , always laughing but it's good." It's nice when people notice that I am a happy person.

I am like a chamleon , I can adapt to different situations well. I have challenges but then again who doesn't? Life is what you make it. I believe people are capable of being good even those that others feel are not deserving of our faith in them.

Creating a space for my son to call his own

It's the first full day of Summer vacation for us since I left work. So far , I have managed to create a personal space for Monsier Nathaniel. I have been slowing piecing together how I would create this space in my head and on Sunday I put the plans into action. I would use items that we already had around the house because they had to be things that were familiar to him. Autism is funny like that, you present something new and it can backfire. We are talking chaos!

Materials used:

• 1 bean bag chair
• 1 yoga mat for texture
• 1  bright colorful kids carpet picked up at  a garage sale
• 1 rack of plastic baskets that connect together. 
• a handful of mismatched socks whose mates have ran away
• a few of his stuffed animals from his toybox
• his favorite balls (textured, smooth, etc)
• a few of his books

I decided on a corner of the living room so that he could be in the same room with me  if I busy on my computer,doing house work, etc. He has these moments where he needs to know I am near him at times. There are times when he just wants to be alone. Although the kid will chase me into bathroom if I disappear for too long. Writing this post though? It took me 2 days to get it posted because every 10 minutes he brought me his tablet and did not "agree" with the episode of Blue's Clues that Amazon Prime was offering.

This new "nook" has allowed him his own corner where he can sit and watch his tablet or play with toys that he loves. He also uses socks for stimming. I am not going to get into the debate about stimming because in our house we do what makes him happy. Happy kid =Sane parents. It works.

I did not spend anything on this project because it involved recycling things we just had laying around. I am notorious for reusing things and I can be extremely frugal. If I can avoid spending money, I usually do.  For example , the yoga mat. We attended a family event where they were giving a free yoga mat to every participant.

This was fun to make and something I had started planning out in my head a few weeks before I knew I would be stay home with the kids full-time.

People are not sure what to say....

As I mentioned before I becoming a stay at home mother as of tomorrow.  The thing is when others find this out their reactions are mixed. I have gotten the ," What will you guys do for money?" to the "I am happy for you and wish I could do the same."  I am not upset at the ones concerned about our financial situation. I mean it is legit. To be quite honest I am scared! I am used to getting up every morning and working. I like having a paycheck . The thing is in my line of work, it's mentally draining.  You see I lost my father in 2010 to a sudden illness. I was not prepared for that , none of us were. I did not do some of the things I had wanted or said what I wanted to. I was forced to look at life from a , "Life is just too short" standpoint.   It really is too short to deal with people who are unhappy on a daily basis. It is not worth it to take time that could be spent raising your children instead of seeing them  on the weekends and an hour or 2 at night.  I grew tired of seeing the disappointment  in my son's eyes when he asked me to have lunch with him and I  couldn't because I had to go into work.  Our autistic son is falling through the cracks of a failing system that is not equipped to handle him because I am not able to spend the time advocating on his behalf. That being said it became tiresome going through that with him and listening to incessant whining of people who have no clue what real pain is because they cannot see past their own selfish needs.

I had to do some soul searching and decide that I needed to do what was best for us and we would manage like we always do. Despite what others think the two of us are working towards bigger goals such as getting our degrees so we can afford a better life for our family. We have a plan and sometimes sacrifices are needed to obtain a goal.

Well Hello There...

Who I am ?

Basically I am a mother of 2 children ,who we affectionately call The Devil Twins...we will get to them in a moment. I got this insane idea in my head that I would leave my job to raise these two because in all honesty it's tough being a working mother and knowing that others are raising your kids. Aside from this it became increasingly difficult to take care of our older so who is special needs. The cost for daycare for a child of his needs is outrageous and in all honesty the conditions in which he was being looked after were terrible. I am a student though and working towards finishing a degree which will hopefully afford me the opportunity to have a better career with flexibility when the time is right. 

The first little monster is now 11 years old  with severe autism and along with other health issues. He's a little sweetheart who likes to give hugs and kisses despite the stereotype. We discovered his Autism when he was 4. My story is becoming pretty common in that he talked a little up until he was 18 minutes and the talking stopped.  I got worried when he was 3 and the speech did not return,  so I contacted Early Childhood Intervention.  These services are usually free. I was glad I did because almost immediately we were set up with a diagnostic team at the local school for special needs. After many evaluations we finally had an answer. This was not my first dance with Autism as I grew up with a sister who is now in her 20's and autistic as well.  I just didn't want it to happen to me and it did. I won't go into the dark side of how I felt and what I went through but over the years I learned what it meant to be strong.  What they don't tell you when your child gets diagnosed is that it is ok to be mad and it's not at all like the movies show.


 The second monster who we refer to as DeeDee Monster is a year younger. He could possibly be a genius but we won't have him tested. We've had enough of testing! Just know that the kid is a science wiz who wants to be a scientist .  My biggest worry is that MENSA is going to come after him or we won't be able to afford his tuition to MIT.  These two are close in age and close in their affections for each other. He looks out for his older brother so it is like over the years their roles were reversed. 

I started this blog so I could share our lives and hopefully inspire some . It doesn't always have to be about Autism but show that life exists outside of Autism .