Houston, We have a problem....

Recently my family and I relocated to the Houston area and I have to tell you it has been one heck of a shock to the system. Special education down here looks so much different from where we were from. Here in the great ol' state of Texas they believe in inclusion! Or at least that's what they say...Here they group kids with all different disabilities and all different age ranges into one classroom. That's right, I have a kindergartner in the same room with a fifth grader! Every single day my stomach is in knots because of this and it doesn't help that the staff the works with my child have very little training in working with kids on the spectrum.

I feel helpless but not hopeless. For my daughter I will pick up and fight for her down here. To make sure the teachers get training to help support my child's progress I plan on exhausting all options. It breaks my heart to see her grouped in a room like this. Like a bunch of forgotten children lumped together because they are not able to communicate like other children, they have behaviors that most don't understand and are ill equipped to deal with. Yup. that's inclusion for you...put them in a room together, set the expectation bar very low, close the door and forget.....

Mom More Broccoli

For months now I have been begging the school to give Leah one-on-one speech services. It just didn't make sense to me to have her do group sessions with other children who were non-verbal. But eh...what do I know? The school told me Leah wasn't able to handle the transition of being in a small room with just a therapist. She threw a major fit the first time they tried and they just gave up. I know my child can be challenging to say the least but I did expect a lot more effort than this. Finally, I was able to get her in to a private speech therapist twice a week and BOOM! Her use of words has been exploding! At first, she would say one word with lots of prompting and then one word spontaneously. Then two word requests with lots of prompting and modeling but tonight she blew us away!

We were eating dinner with our usual non stop conversations. With a twelve year old and five year old fighting for our attention, our conversations are like a chaotic race of who can get their thoughts out without being interrupted...I try very hard to keep my attention on one child's thoughts while holding up my hand to stop the other from interrupting. All this, while still being able to use my free hand to actually eat. Leah kept trying to steal broccoli from my plate and I brushed her hand away several times with a quick "no Leah, eat your food". As I was trying desperately to listen to the girls chatting away about their day, we all heard "Mom More Broccoli". All conversations came to a screeching halt. We were all in shock for a moment and then burst into a thunderous applause as we realized those words came from Leah. My baby girl who has struggled to say any word, now just said three in a row and they were crystal clear! Music to our ears! I knew that she could do it! I knew she was right there just waiting for someone to help push her! I am so thankful that I did not stop searching and pushing for more for her!  Tonight my heart is full with hope and anticipation! Thank you God for hearing our prayers and guiding me to the right people. For giving me the strength and the wisdom to know that when one door closes you will open another. And for trusting me with this precious child. I will do my best and let you do the rest. Amen

My Autism Awareness month article!

Here is the article I wrote for the Great Start newsletter! For those of you who haven't read it yet, here it is!

As the mother of a preteen with two younger siblings on the Autism spectrum, life can be quite challenging. My younger girls are quite different in their impairment. One child is non-verbal and has extreme difficulty in social interaction and communication. The other one is very verbal and is excelling in her general education setting.

I like to describe autism as the invisible disorder. There are no physical characteristics that make these children stand-out in a crowd. As a matter of fact, I always get the look of shock when I reveal that my verbal child is on the spectrum. “No? Not her! She looks so normal!” is the response I’ve gotten way too many times and it always stings. She IS normal, just different.

 I’m just asking you to choose your words with care. I am asking you to consider this….I had dreams for all of my girls from the time they were in my womb. Dreams of playing tea party, getting dressed up for dance recitals, going on shopping trips to the mall, to the zoo, to the movies. Their first date, their prom, their wedding….My dreams are different now. What you take for granted comes so hard for my children. It is work to make friends, work to play with toys, work to follow simple direction. It takes so much effort for them to go on a simple shopping trip to the mall. All of the smells, noise, lights, and movement can send my children into sensory overload meltdowns. Let me translate for you, it would be the kid that is kicking and screaming and trying to run away from Mom. I can’t tell you how many stares, laughter and rude comments my family has endured due to the insensitivity of some. Their judgments have placed the weight of the world on my twelve year olds shoulders. I am in awe of her strength, compassion and devotion to her sisters.

So, I will continue to dream for my girls. We have chosen to not look at their limitations but to look at all of their possibilities. We are a family just like you, we just have special needs. While you are out doing your day to day thing in the month of April, take time to notice the puzzle pieces, the donations jars for autism and the blue porch lights and think of families like mine.  And that is what drives me to bring awareness to our community. So that I don’t have to see that look on my child’s face. So that families like mine won’t feel so out of place in this world.  So that when my little ones grow up they will be accepted for who they are. So that while families like mine are doing our best to raise our children, we will know our community supports us. I do this for my girls. They are not defined by their behaviors. They are so much more than that and I want you to see the beauty I see.

Autism affects 1 in 110 children. It knows no racial or financial boundaries. It is a developmental disability that causes significant social, communication and behavioral challenges. How significant the impairment depends on where the child is on the spectrum.

To learn more about autism:  

Jackson Autism Support Network

jasn-mi.org

autismspeaks.org

Jeanna TenBrink

Proud Mom of two children with autism and one strong and compassionate tween!

I'm a blogger!!!

I was dropped into Autism World three years and 2 months ago today. It was like being stranded in a seedy part of town with $100 bills taped all over my body. It left me completely vulnerable, helpless and scared out of my mind! I didn't want to be in this world. It was a confusing, dark place to be. I wanted to bundle up my precious baby and get on the first plane out of there but there was no escape route. No busses, planes, trains or even rocket ships could get us out of this place. I had to face the fact that we were going to be permanent residents here. And while we were trying to make this world our new home, our family was hit with a second diagnosis of Autism....So, as I tried to reassure our oldest (who is neuro-typical) that we would make frequent visits to the other world, where she is more familiar, where all of her friends live and her interests are, I couldn't help but feel at that time that it was possible to do it all. To live in Autism World but vacation in the Other World and make it work for all of us. At that time I thought it was possible. But fast forward three years and 2 months since "D" day and I can barely remember a time when we didn't live in Autism World. It has consumed us with it's demands and has driven most of our close friends away.