Sharing Stories and Spreading Awareness (Autism):

I want to continue to do things like this; sharing peoples stories and helping spread awareness. I see posts on FB by my cousin Melissa about how she is a special needs mother and trying to spread awareness about Autism. I realized that I didn't know her and her son's story. I have always wanted to know but just never asked. So I finally did last week when I saw another one of her posts. Here is her story: 

"My journey with my sons Autism began in 2011 at the age of 2, when my dad came to me about concerns with Julian's development, I remember at the time I wanted nothing to do with the thought. I didn't want to believe that something could be "wrong" with my baby boy.  He hadn't spoken yet, only baby babbles and said mama occasionally, other than that Julian was early with his development. He crawled at 5 months old. Rolled over at 3 months old, walked at 11 months old.  It wasn't until 2012, after I had moved back to Minnesota from Virginia during a divorce, that I learned about the Pediatric Autism Clinic at the University of Minnesota. I waited for a year to get into this clinic after Julian's new pediatrician saw my concerns and referred me. 

I remember the day I got the call that there was an opening earlier than our scheduled appointment and of course I took it. Julian's Dad and I are still friends, so he came with me to the U of M for his appointment and that day we met Dr. Rumsey. She is a wonderful, wonderful neuropsychologist and we still work with her today. Anyways back to that day, Julian underwent a bunch of testing, and Dr. Rumsey confirmed what we already knew. Our son is on the Autism spectrum, with a diagnosis of global developmental delay in addition to that.  It wasn't hard to accept because at that point I had come to terms with it and began advocating for my son after the big move back to Minnesota. 

I got him the services he needed with early childhood special education, speech therapy, occupational therapy, PCA services and a good disability social worker, who we still work with. Julian is non-verbal, with self-injurious behaviors.  In the beginning, he didn't self-injure, that didn't begin until about the middle of kindergarten, which began with pinching his cheeks when he would get overstimulated or upset and unable to communicate his needs. With continued redirection of his self-injurious behavior the cheek pinching stopped for a while, then he began to bite his wrists so badly they would bleed. This got Julian a referral to a level four setting school for developmentally delayed children.  

This school has been good for Julian, however, it is an hour and a half drive from home, and that takes a toll on him. Living in a smaller community makes it harder to get the services you need unless you know where to look and know how to advocate for yourself. Having a good support system has been very very helpful as well.  Julian is able to better communicate, using something called picture exchange communication system (PECS) which he is very good at, he will flip through a book, and make me a sentence, then hand me the sentence strip to let me know what he is requesting. He also has an iPad that we use with him, although he doesn't always want to use the iPad. Julian is a very stubborn boy, (obviously a Borning lol) we have touch German blood and don't give up easily. He is also a very sweet, smiley, giggly, happy-go-lucky little boy. Everyone who meets Julian comments on how sweet he is. That doesn't mean he doesn't have bad days, winter is especially hard for him and we usually see an increase in the meltdowns and the self-injury.  Bath time is really a struggle for him. Because is sensory overloaded, and relies on a blanket covering his head to "ground him" when we take the blanket away for his bath he will go to bite himself, so it requires two adults to bathe him, so that he does not hurt himself. This is getting better now, but for a while it was so bad we had to rely on giving him sponge baths so that his wounds would heal.  

He might always have issues with the sensory overload and he might always regress a little bit, I have hope for him to go to college, just like any Mom hopes for her child. I know that Julian is very very smart, probably smarter than we are. His IQ is high, even though he has a developmental delay he is learning, just in his own way. Outside the box, and the norms of society. I also know that I will take care of Julian until I'm too old to do so, I will never give up on him, I'm his constant, in a scary changing world, I will never put him in one of those group homes when he is an adult, I can't bear the thought. How he would feel.  He'd feel like mommy gave up, and I won't. Ever. He is only 6, I have so much faith in him that he will go far in life with the right support and the right therapy. 

Julian loves to be tickled, when he is having a good day, his giggle, which is like Ernie from Sesame Street, is infectious, you can't help but smile and giggle along with him because he is absolutely delighted in what he is doing.  On bad days, Julian tends to get very vocal, he'll screech and cry, and that can be emotionally draining because I go through all the steps to get to the bottom of what the problem may be. Is he tired? Is he hungry? Does he need to use the bathroom? Does he not feel good? The list goes on and on. I'll suggest to him that he uses his PECS, or lead me to what he is wanting and show mommy. Sometimes this works, but if he is not wanting to cooperate and let me know of his needs, it is really hard and it's a guessing game.  After a while he will usually calm down, I have found that lavender oil foot rubs and joint compressions really help him to feel more centered and grounded. 

I was doing all of this as a single mother, as Julian's dad lives in the cities and I live three hours away. Although we are friends, he does not see Julian more than once a month. In 2012, I met someone in the midst of the divorce, fast forward to now, 2016, we got married, and his support and understanding of Julian has been wonderful, he has gone to U of M appointments with me, IEP meetings, doctors’ appointments. The father that Julian needs every day, he finally has, when I'm exhausted and what I'm doing is not working with Julian he steps in and will help Julian with whatever he is needing. 

We still have daily struggles, some more than others, but we have a good support system in place. I keep advocating for my son, never giving up hope, and spreading Autism awareness, he is not " disabled" he is differently abled, and he is beautiful."