Dear Special Needs Parent

Dear Special Needs Parent,

I believe being a parent to a child with special needs is the hardest job on the planet. We usually put our needs and wants on the back burner in order to help our children succeed in life. I am writing you today to provide a wake up call. Take some time for yourself. Stress for a special needs parent is often unimaginable, take time to try to de-stress. Most important thing, take care of yourself health wise. See a doctor on a regular basis. As our job is the hardest on the planet, it is also (in my opinion) the most important. We need to do everything in our power to take care of ourselves so we can be around as long as God sees fit.

God Bless,
Lee

Siblings and the ripple effects of autism

  Jenna is my youngest and she is what most people in the special needs community would call "neuro-typical".  Jenna does have a couple of genetic diseases which are Towns-Brock Syndrome and Chiari 1 Malformation.  From time to time we have a health crisis with her which requires a trip to hospital or to a specialist but for the most part she is your average (not average to me, but awesome) 5 year old little girl.

  The thing that sets her apart from most of her peers, except that she is just extra awesome, is her brother has autism.  She on a daily basis deals with meltdowns, fits, and all of the other tough stuff that comes with having a brother with ASD.  Jenna does the above with grace and usually a smile on her beautiful face.
  Our family is often consumed with autism and all the needs that come with it.  I often feel that Jenna gets the short end of things. I am trying my best to have some things that are hers and just hers.  Somethings that make her feel special and give her chance to be Jenna, not just Major's little sister. Thankfully my aunt has helped with this and we enrolled her in ballet/tap classes a few months ago. She is over the moon, in love with dancing.  I smile when I see how happy she is when she dances.

I love you Jenna Lee.

Swim Lessons

Major is taking private swim lessons at the Y. Private because he has tried to take the group lessons before and could not handle it. Major is not taking the swim lessons in order to become some great swimmer (but if he does that would be a huge bonus). He is taking the lessons for the therapeutic aspect of it, at least that's how I see it. Major loves the water and I figured he would be more willing to work his muscles more if he was swimming. Major has his rough moments at swim class but he is willing to go. If nothing else at least it is an opportunity for a successful outing.

RASCAL FLATTS - I Wont Let Go lyrics

 It's like a storm
That cuts a path
It's breaks your will
It feels like that

You think your lost
But your not lost on your own
Your not alone

I will stand by you
I will help you through
When you've done all you can do
If you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go

It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight

And I wont let you fall
Don't be afraid to fall
I'm right here to catch you
I wont let you down
It wont get you down
Your gonna make it
Yea I know you can make it

Cause I will stand by you
I will help you through
When you've done all you can do
And you can't cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
Oh I'm gonna hold you
And I wont let go
Wont let you go
No I wont

 

The above song is quickly becoming my anthem for my relationship with Major.  It was a TOUGH weekend. Lots of frustration for everybody. Not knowing how to help Major through meltdowns or doing the wrong thing, which in turn made the meltdowns worse. I am learning but it is hard. I am determined to stand by him and be the best mommy I can be. Autism will not prevail!!! Some how by the grace of God autism will not win. With LOTS of help from God I will figure out how to make things easier for Major. If that means I need to become the most organized and schedule oriented mommy out there I will. Even though every fiber in my body fights it, we will win. I love you Major Austin Klekotka.

Whole lot of to much Christmas Going On

  Did I prepare him enough for today? Should I have done more? Would it have been better if we had stayed home? I am left asking myself the above questions tonight.
  Today was not a failure at all. The children sleep in a bit (3:45 am.), which was nice but still extremely early. I did get up with them because I wanted to see the joy on their faces when they discovered what Santa had brought them. Now looking back on this morning there were some clues that today was going to be a bit much for him. The big clue being, Major stimming and stomping with the excitement over his new RC car, books, and video games.
  I had hoped that all would go well at my sister-in-law's, but as the day progressed things went down hill fast for Major. It is hard to explain and for people outside of the autism world to truly understand, but it was truly just to much for him. It was to chaotic, which it should be with six kids running around high off of all the presents they had just received. After a while my heart just broke for Major. I could physically feel what he was going through. Multiple times he got loud and yelled at the other children. He even tried to physically strike out a few times, but luckily we intervened. I tried on multiple occasions to get him to retreat upstairs to play the Wii but her refused, because he wanted to be in the action (even though it was to much). Major did manage to go outside a few times and escape with his daddy, which did seem to help a bit. As the afternoon progressed and Major continued to unravel, I looked at my husband and decided it was time to leave. We couldn't get home quick enough to his safe zone. He feel apart in the car and cried, pleading to some how get home instantly. Again my heart broke for him. I love him so much and wish I could just take it all away. As my profile picture on facebook says, "Autism isn't for wimps."
 

Sensory/ To Go Bag

  I am getting tired of being stuck in my house. I am bound and determined not to let autism win. In all honesty it is VERY difficult for us to "venture" out of the house. Major's autism and sensory issues overload not only Major but me also. Due to the overload, in the past we have not gotten out much, besides the occasional appointments and therapies. I am learning (slowly) how to prepare ahead of time so I stand a better chance in having a successful outing (even if its just for therapy or doctors appointments). I have learned if there is a big appointment, trip, or errand I will write a social story. I try to do this a few days ahead of time so Major can read and go over it numerous times. I like to use pictures in the social story. If I can I will visit the place before hand and by myself so I can take actual pictures of the place and incorporate them into his social story. This has proven to be pretty successful.
  My latest success is creating a Sensory/ To Go Bag. The bag itself is just a regular everyday backpack. Below is a list of what I traditionally carry in the bag.

• CD player and headphones
• a portable DVD player and movies
• fidgets
• coloring book and crayons
• a book
• his weighted vest
• a change of clothes for him
• snack and a drink
• noise canceling head phones
• soon to be added (I hope) an Ipad
• portable PECs schedule

Having the To Go bag with me at all times when I am out with Major has gotten us out of some rough situations and has avoided some big meltdowns. I am not trying to say it is the cure all for our issues. Believe me he/ we still have meltdowns and non-successful outings, but its getting better.

My Love/Hate Relationship with Autism

Major has had his autism diagnosis for almost a year now. Over this difficult year I have developed both a love and hate for autism. Below is my list:

Things I love about autism:

1. I love how blatently truthful he can be
2. I love how he does not judge anyone
3. I love how autism has brought groups of people into our lives that would not otherwise been there
4. I love how autism has deepened a relationship with my aunt
5. I love the compassion people show my son

Things I hate about autism:

1. I hate how frustrated he gets and no real way to deal with it
2. I hate how hard he tries to stay on task and focused that he bites himself
3. I hate the fact that he strikes out in violence and then shows no remorse
4. I hate the fact that I have to get very creative in funding most of Major's therapies and interventions
5. I hate that I know several police officers by name because they have had to intervine on my behalf
6. I hate the fact that my son is only 8 but has riden in the back of police cars on several occasions
7. I hate how helpless it makes my son feel
8. I hate how helpless I feel when it comes to helping my son