Snug Vest

                                                                                                                                                                            Happy Family     Trust Doesn't Always Come Naturally Autism

                                                          Come Naturally Autism     Happy Family

As parents we often think that the trust our children have in us comes automatically. It seems to always work that way. Touch, smell and tone of voice are the first connections between baby and parent(s).  The baby cries and the parent(s) responds. It doesn’t take long before baby realizes how to keep mommy and daddy on their toes. All of these wonderful things create a powerful bond between babies and their parents.

What happens if the child is not able to receive such stimuli be it because of logistics or differences in neurological function that make it difficult for the child to respond to or understand typical stimuli?

Trust doesn’t always come automatically. I found that out through my own personal experience as a parent.

My son arrives at 27 weeks two days. Motherhood does not resemble what I imagined it to be. At first, everything was going well. My baby was small, but feisty. At a week old he became very ill. Necrotizing enterocolitis (NEC) happened. Apparently his heart flap didn’t close so nourishing blood did not redirect to his gut and he developed an almost fatal case of NEC. One heart surgery and three gut surgeries later we are locked in a battle between life and death.

I tried to make the best of it, staying positive and be the best mommy our situation would allow. I visited my son daily, always doing as much as I could for him. The NICU nurses were better than wonderful. They always called to let me know if anything was changing or if I needed to come in to support him during rough times. I received those grim calls more times than I care to remember. It was a never-ending rollercoaster ride.

Three months later; I walk into the NICU for my daily visit. There sat the Attending smiling as big as he could while singing, “There she is, Miss America.” I giggled. In an instant his smile becomes more humble and soft, tears well in his eyes. His lips quiver just a little he uttered the words, “I’m filling out discharge papers for your son. You’re taking him home.”  This was a dream I never thought would come true. God answered my prayers. It was 4 days before Christmas.

My husband and I scramble to get everything ready for our baby to come home. It was the happiest time of my life. The baby didn’t seem to mind all of the shuffling around. He was quite pleasant, never cried or fussed. We got him home and began to settle into our new family life. The next morning I woke up early to get his bottle and medications ready. I peeped at him and said, “good morning.” He took one look at me and began to scream an inaudible scream; eyes wide with furrowed brow and tears streaming down his cheeks. It took a minute before I realized he was terrified. I imagine he could not understand why he wasn’t in the NICU, the only place he knew and where he felt safe. And I’m sure he couldn’t understand why the nice lady who visited daily was the first person he saw that morning. All I could do was comfort him and tell him it would be alright. I assumed that he trusted me because he saw me every day, but he didn’t, not outside of the safety of the NICU.

It didn’t take long before we both got the swing of things and the mother/child bond began to take place. It was heaven when he finally realized I was all his and he was all mine.

When my son turned three I decided to put him in a special preschool class called, Let’s Talk Too, which was made up of 70% typical and 30% non-typical children. He loved it. I loved it to until an incident happened that changed everything. I promptly took him out of the class and scheduled an IEP meeting to officially take him out of the school.

 Jackie and Hunter Autism Love 

(Jackie and Hunter at 5 years old)

Right around the same time autism arrived. Well, it already began presenting itself when he was about 28 months. I knew very little about autism, no more than what I read when I googled the traits he exhibited. I found a list of the 10 most common traits of autism. Out of the ten, my son had eight. The next thing I looked for were ways to treat autism. I came across some therapeutic exercises and began working with him immediately. While doing so I began working on scheduling an appointment with our local autism specialists. My son didn’t get the diagnosis. It would take 5 years before an official diagnosis was rendered. The only reason I can attribute for this process having taken so long goes back to something said to me during our first attempt at getting an autism diagnosis. I was told by one of the specialists, by working with my son so diligently, I’d probably shot myself in the foot. Go figure. Being a parent who is proactive and working to do the right thing ends up being the worst thing.

Fast forward.

My son is 8. He has been officially diagnosed. We are now able to get specialized therapists to work with him and I am finally able to focus on his homeschooling. For the past 5 years I had searched for speech and occupational therapists willing and able to work with my son. Not having a proper diagnosis really hindered my ability to get the therapies he needed. I had to do doing everything on my own with exception of physical and hippo therapies.

Therapies are now in place, but school is not going well. My son is fighting me every step of the way. He will not listen to me or follow instructions for school work. At first I thought it had to be the autism, but he wasn’t giving me grief about anything else, just school work. Then it dawns on me. The roles I’ve been in for most of his life have been the nice lady visitor, mom/caretaker/nurse, therapist, playmate and now teacher, a role he was not familiar with me being in. What do I do? I sat down with my son and began to explain as best I could that I wanted to teach him wonderful things and I showed him examples of the things I wanted to teach like the alphabet, numbers, counting, drawing and all sorts of other things.  I asked him to trust me and allow me to teach him. He seemed to agree and we began the process of adjusting to our new roles as teacher and student.

Over the years we have had to adjust to many things and with each thing gaining trust has always the priority.

My son is 16 now and has a mind of his own. There are many things I still have to teach him as he is transitioning into adulthood and there are many hurdles we have yet to cross. One thing I no longer have to worry about is gaining his trust. I guess we’ve been through enough for him to know that I’m in this for the long hall. No matter the situation, be it school, work medical or other, it is met with my son’s calm, trusting demeanor and a knowing that no matter what, we will get through it and it will be okay. 

Jackie and Hunter Autism Advocates

(Jackie and Hunter at 13 years old)

Jackie is our guest blogger and all around rock-star autism advocate with an amazing blog called Autism's Love & A Voice from the Spectrum. She is a great writer, an incredible poet, and has a son diagnosed with autism. Her work ranges from her experiences being diagnosed late with ASD to the journey she is on currently on now as a parent. We hope that you check her out and enjoy her blogs as much as we do!

Written by Ryan Leung — January 07, 2016

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