Autism Support or Lack There Of – Coming to Terms with Your True Support.

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Please share this post to spread ‪#‎AutismAwareness, so that it will lead into Acceptance for all those living with and affected by it. There is no cure, just Understanding and Support. Thank you.

I posted the above as a social media experiment, asking for people to share in order to find out if and how many of them would. I didn’t post a photo of Jackson with it because I didn’t want likes or shares based off a cute photo but rather I wanted it to focus on just Autism.

However, it didn’t make the impact I was hoping for as it was only shared minimally. It is a disappointment that only a small group expressed their support, even more so that those that did share it didn’t get any additional shares or likes for it either. I ultimately believe the issue comes from people not realizing the impact autism has on the individuals who have it and/or the families that are affected by it. Therefore, not knowing or not having it directly affect them in their lives affects whether they want to understand or share the information. I thank those that went out of their way to share.

I am so thankful for the support we do have. The family, friends & educators that are with us day in and day out, week in and week out. The ones that I lean on when I need a shoulder or if I need that shoulder to cry on, the ones I call for conversations to bounce ideas off of or to get ideas from and the ones that go out of their way to include our family in their lives.

 

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Not to Brag…

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But his mama finally got off her bum and rearranged Jackson’s play/work space to mimic the setup at therapy, especially the table as that is the focus and where tasks are completed. The theory behind me doing this is that similar setups between the two places will start to make quicker and better results, at least I’m hoping so. Jackson will sit in the chair to the right, and I’ll sit in the other while kind-of straddling his chair. This will help keep his attention both on the tasks given to him and on me. We’ll be able to work on anything with this setup, from following directions to communication skills to occupational tasks.

I’ve been meaning to do this for a while but since we found out that our grant for Jackson’s therapy will come to an end once he starts kindergarten I’ve wanted to get it done as soon as possible. We’ll start out slow now, getting him use to the new setup and work through the summer mimicking more of therapy as we go to carrying it through into the school year when we won’t be receiving services any longer…which I’m already mourning the loss as I completely and utterly in LOVE our speech therapist.

Daycare Woes

It’s been a hard two weeks as we are once more experiencing growing pains with Jackson. I stupidly taught Jackson how to yell/scream. My purpose was to teach him something fun (like the Home Alone aftershave yell) and at first it was, but once he learned how to do it he started yelling/screaming when he became mad or frustrated and since he knew it captured both of our attentions. And oh my, it is ear piercing! He’s also been having a few issues arise with being aggressive again. And I say again, because he was at the beginning of the year and once in a while with me since then but it had started to subside and was almost non-existent.

However, in recent weeks it has returned with him being aggressive with myself, a couple daycare staff members and a few kiddos at daycare as well. The first notification was daycare calling me last Tuesday during the middle of the day. My first reaction as is any parent when their daycare calls is ‘Oh Shit, what now’, especially me because Jackson is hardly ever sick. Then the second notification was yesterday, a week later.

My mind becomes a colossal mess when behavior issues arise at daycare. I become sad, sad that my child is acting this way, sad that I’m not able to understand why he is acting this way since he is unable to tell us and sad that this is it, this is what we are and will always be dealing with. Growing pains that we will take weeks, even months to understand with trial and error. My mind does eventually go to the awful place of ‘What if they kick us out?’ See, we have had that happen to us twice before over similar phases of Jackson’s growing pains. It’s not a pleasant event for anyone involved as you feel betrayed and disappointed in the individuals you had trusted to provide care for your child, even more so as we were upfront and honest with them about Jackson’s ASD from the beginning.

That is neither here or now, as we have moved on but that is always my fear with any issues that arise from daycare and that I’ll get a phone call that they want to give us the boot. I need to stop that though as our current daycare has and continues to be understanding and supportive of Jackson, knowing that this isn’t normal behavior for him and wanting to help. Thus we have our behavioral therapist coming in this early next week to assess Jackson’s environment and behavior at daycare and provide any solutions that may help improve better behaviors and attitudes.

At home we have already started making sure to continuously give Jackson positive reinforcement as he does thrive so well with that. Ultimately, I need to remember that this too shall pass as does all of Jackson’s terrible phases. It is with assertiveness that my husband and I tackle all issues that need to be addressed promptly and gain positive results for Jackson to succeed and so everyone involved in his life can move forward…to the next growing pain.

Hello

Hello, my name is Hali. I’m an autism mom of a 5 year old, Jackson. Together, my husband and I are journeying through both a blessed and cursed experience but one that has led to a very unique and fulfilling life…so far.

A quick take on Autism (aka ASD – Autism Spectrum Disorder), it is classified as a bio-neurological development disorder that impairs an individual’s communication skills, social interaction and cognitive functions, while involving a range of restricted repetitive behaviors, interest, and activities. ASD greatly varies from person to person, no two people with autism are alike. Children with ASD do progress with early interventions, great improvements to their skills and development can be accomplished.

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Our Jackson loves reading his books and enjoys being outside so he can explore. He can’t get enough of PBS’s Dinosaur Train (thank gosh for Netflix) and eating pop tarts. He was diagnosed with a developmental delay with autistic tendencies prior to turning 3 with a full autistic diagnosis by age 4. Over the past year, we have seen Jackson’s motor, speech and peer interaction skills improve greatly. He continues to use sounds, gestures, sign language and an augmented communication device to develop his communication skills. Thus he continues to grow and evolve, thanks to our wonderful family, friends, therapists, school educators, and daycare staff.  We all understand working with him is ever ongoing, at times challenging but very rewarding when he succeeds.

We are constantly trying to understand his world of different sounds, sensations, and perspectives that are completely different from our own. He enjoys the simple things in life and we just need to enter his world to truly understand him.

Our Jackson is truly our inspiration and our joy.

I hope to share our ups & downs, our trials and tribulations but most importantly our joys as we continue this rollercoaster ride, called Autism.  I hope you enjoy reading about our journey.