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I got this...

7/28/2015

 
Why do our children have moments like this? Why it that with a blink of an eye, they can start to exhibit excessive behaviors and with no clear reason?  Sure every behavior has a function but he goes from happy to sad within 2 seconds.  He repeats several words that have nothing to do with the moment.  He can slap, kick, and even put a hole in a wall.  Then when it's all over, he hugs you and acts like nothing every happened.  Moments like this I question what demon took over my son and why can't this demon just go away forever?

Not sure about other parents but when this happens I have to ask myself, what am I do wrong? Is this going to be my life forever? WHY ME? 

I do not believe I have done anything wrong.  I am a good person, a reliable daughter and friend, and I think a great mom! I know how to handle this.  I help my clients all the time with advice on how to deal with different situations but why can’t I fix this with my own child?

Yes, this is my life forever.  Not exactly what I had in mind when I said, “I do” which by the way, I fainted at the alter shortly after those words came out of my mouth.  Was that some sort of indication that my life was about to turn upside down?  No lie and no exaggeration- passed out cold in my beautiful gown right next to my handsome groom.   

I am grateful for my life and all God has given me.  I mean everyone does tell me God would not give me anything I can't handle....
After all, I can handle anything right?  Whenever anyone tells me this, is it bad that I want to punch him or her?  I mean SERIOUSLY!!!!!!! UGH!!!!!! BREATHE!!!!!! I  know my family and friends mean well but that has to be the most ridiculous statement.  The more I think about it, the more irritated I get.  So the parents that can’t handle it are saved from having a child with special needs? And who determines who can handle what? 

So what do we as parents do?  I cry, I second-guess every decision I have every made, and I start to feel sorry for myself. Yup, that's what I do for all of 10 seconds because I have no time for this.  I need to quickly become therapist/marriage counselor/family counselor.  I need to get through this one and try to figure out why it happened.  I will not second-guess decisions I made and will fight on because he is my boy and we are in this together.  Do I worry about his future? Everyday... Do I worry about my husband and kids? Everyday... Do I worry about my health and sanity?  Everyday... Do I worry that he is going to high school? You have no idea- Just wait for that blog in a few weeks.

This is just a snapshot of what many parents including myself go through.  If you want to be a good friend and support to us, don't tell us God would not give us anything we can't handle!  Be sensitive to what you share with us because more then likely, our dreams have changed and our lives and future plans may be very different then yours.  I am trying to juggle my marriage, my relationship with all my children, multiple schedules, my friendships and my career.  I am doing the best I can, we all do the best we can but sometimes we are tired.  See- this is all okay!  I write, I get to work with amazing families, I have a beautiful family of my own, I run, and of course I drink wine.  This is my super power, what's yours? Cheers!

In my shoes...

7/14/2015

 

I have been at this for sometime now that my son is a teenager.  I have been that parent (and still am) that will listen and ask other parents for ideas or advice on new therapies or therapists, treatments, doctors, etc.…  I see parent groups on social media sites and/or the Internet support groups give their recommendations or share resources that they have used. It certainly helps having that support but parents really need to make decisions that are best for their unique situations. 

As a parent, I understand first hand that we do the best we can for our children that I will mention did NOT COME WITH A MANUAL, UGH! Making decisions or hiring different professionals to work with our children is by no means an easy task.  As a matter of fact, it is one of the most difficult decisions to make.  Everyone has an opinion about everything and some are extremists.  Everyone has their personal experiences or their children have had experiences that then dictate their opinion on the matter.  We have to all realize that we all have different expectations of our children, we all perceive our children’s strengths and weaknesses in different ways, and to be totally honest, we are not always realistic with our children’s capabilities.  Now before you tell me where to go, read me out. We must ALWAYS set the bar high, we must always push our children to reach their full potential, and we must NEVER give up!

Unfortunately, our children and all that comes with having a disability can be advantageous to some.  We hear of a new type of therapy that costs thousands of dollars, a new medication or diet that cures our children, a school that sounds to good to be true, or the best… a pill that makes our children verbal. I have seen and heard it all.  As parents, we are open to trying because who knows?  We will never know unless we try.  The amount of money that is spent and hours put in is inconceivable. 

Advocates, the “A” word.  Where do I begin?  I feel that the word “advocate” has been taken way to far.  The stories I hear are insane.  Since when did becoming an advocate mean disrespectful, unprofessional, degrading, knowing it all, and why must they YELL? The fee is what?  Why would anyone want to go into a situation and make it worse for a student?  Why would anyone want to have a good teacher or therapist reconsider his or her career? The kicker here is, does the “advocate” even know the child?  Now, before you yell at me again, read me out!  I have been in situations where mistakes have been made, environments that were not conducive for a student that adjustments needed to be made, classroom changes were non-negotiable, and IEP’s were poorly written and/or not being followed but this can all be rectified with understanding student and parental rights, understanding the child’s needs, and working collaboratively with the team.  You can respectfully agree to disagree and try to work out a solution.  When that is not possible, you exercise your rights as a parent to file for a mediation and/or due process. 

Having a child with a disability keeps me on my toes 24/7.  His future and his success is my #1 concern.  Because of this, of course I am forever stressed.  I have a lifelong situation with my child and all I want is the very best for him.  I do not and should not have to constantly fight!  I want to effectively “advocate” for him and create the best damn team possible so my son reaches his full potential. So my son can be as independent as possible.   I will spoil all that work with my son, make them feel beyond appreciated, and support them as they support him.  This has worked since I started this journey and this has helped many families that I have the opportunity to work with. 

Do your homework and research before bringing anyone on your team.  Make sure everyone understands your goals and that all work together. Try to take things day by day and celebrate the accomplishments when possible.  Life is to short and our children need us around as long as possible. Be healthy and smile, our children not only need that but feel that.

So here it goes........

7/7/2015

 
This past April, I started to share daily situations in my life that included my experiences with my family including my child who has Autism on my social media pages.  I felt it was important to use April a/k/a "Autism Awareness month" to share my everyday experiences and challenges.   You see it is all about "light it up blue" and "awareness".  This is all great but what about the other 11 months?  I wanted to share the honest truth and not hold back any feelings as I couldn't imagine that I am the only one going through this.  What about the fact that we as parents of ALL Special Needs children have many similar fears?  Of course I tend to speak of Autism but so many of you can relate to me.  

so........ I just turned 41, yes 41! Shared an amazing weekend with my husband and ended it with a massage!  Wow, first off I was able to create a team so we can be gone for 36 hours.  Second, I was able to convince him that it would be fine.  The planning that has to go into leaving a child with a disability for just a day and half is exhausting in itself.  I kept asking myself, is this worth it?  Well I will say that it is ABSOLUTELY worth it because we need to not only celebrate me (deserve it) but we need to celebrate us!  After 17 years, we are still going strong but that is because we make this time for ourselves.  No matter how much stress was a part of the planning and how many times I said, "I am going to just cancel"!
Marriage is tough, relationships require working at them and we cannot ever forget that.  

I am not here to give marriage or relationship advice (although I do feel I give good advice).  I am sharing that after my wonderful 36 hours of being child free, I came home to a meltdown!!!  That threw my relaxed muscles into a hot knots.  Sure he behaved perfectly while I was gone, slept awesome, woke up happy, had a great day at camp and even a great day at therapy then WHY??????  Does he hate me?????  Maybe he was mad because I left him but he loves the sitter and his brother was with him.  I will never know why as he does not have  enough language to share with me his feelings but WHY does this have to happen?

It's 11pm and he is still awake.  His mood is better and he has gotten over it but he is refusing to go to sleep, UGH!   I reflect back and I can say it was worth it.  My husband and I needed the "adult" time.  We as parents MUST make time for ourselves.  I know it's difficult, but give it your all and make it work. If you can't get away, how about a staycation?  How about just hitting the mall for a few hours or having lunch with friends?  I have no regrets and no guilt.  We as parents work so hard for our children.  We need our time too, nothing wrong with that!




    Ysela Heim

    I will be sharing my  experiences both professionally and as a parent in hopes to help other parents. If you notice the beach picture above, that is my happy and calm place.  At times, this is where I go to clear my mind.  I encourage everyone to find a place that can do the same for them.

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