Our Journey Part 4

Our sweet little Dregon was born weighing 4lbs 12oz at 35 weeks; after an emergency C-section. It seems Dregon played lasso with his umbilical cord and lassoed himself. ;) He was a preemie and spent 11 days in the NICU. He required a feeding tube, oxygen, and the warmth of the incubator. He was so small, but yet so strong. He had the most unique, distinctive eyes and his hair was pure white. His fingers were long and he had all this extra skin on his knees. My Dad use to say our son Jeremy had to grow into his feet, well Dregon had to grow into his knees. Lets just say he kinda did :) From the moment he entered this world, to this day, Dregon has done, seen, and been his own way :)

As he grew that first year, he became our most vocal child. Dregon was the polar opposite of his brother Snow. Snow was loud vocal, loved to be center of attention, fearless. Dregon was very laid back, looked cautiously before he jumped, was happy with individualized attention, or happy on his own. There was not much that upset him. By all accounts his was the perfect baby, he ate good, slept good, played well, and was a completely happy baby. To this day, that has not changed.

Around 18 months, Dregon stopped speaking clear words, started to babble again, and speaking only single words. One was not one, it was "on" with an "e" sound at the end. Two is two without the t. Three is just ee. We understand him; but it was a learning process.

He also stopped responding to his name. That was more pronounced to us; then the lack of eye contact. The lack of eye contact, not pointing for objects, lack of normal gestures for a toddler; being happy about a new toy or learning a new activity; running to share, that was all gradual. We honestly thought it was Twin syndrome and how dominate Snow was. As you know, we were wrong. When I did the questionnaire at the pediatricians is when I realized there may be a problem. Which, as you know, started us on this journey.

Today, Dregon is still that happy, fun, loving, laughs at nothing, considerate, extremely smart little boy. He literately cracks up laughing, at nothing we can see, but he can. It makes you laugh with him. His laugh is addictive. Dregon laughs at least 90% of his day.

He just does not view the world at all; like the rest of us "normal" people do. Which is a clear shame. He loves to learn, he loves to run around outside with no shoes on, jump up and down for hours, to play in the dirt, and walk on balance beams. Dregon laughs at bees and birds, dogs he finds a mystery. He sees all the opportunities in the world; not the obstacles. He is completely addicted to his tablet. Dregon knows all his ABC's, can count to 15, and we just found that he can draw. Everyday we have to watch more closely to what he does and just learned. He is not like his brother Snow, he will not come running and say; "Look what I just drew?" He could careless if we know.

This is a puppy or boy he drew. I did not see it until @erodedthoughts told me. I saw a really cool circle lol I guess one artist sees another artists work :)

Everyday I worry for his future; for the world is not designed for him; but then I hate that it is not. I would love to see it through his eyes, to not see the negative and only the fun and laughter. As, I said we don't see Autism as a hindrance; but as a trait designed for him; that will help; not only him; but hopefully others.

That does not mean we do not plan on making sure he can survive in the world; on his own. That is why were are seeking help and evaluations. We are just trying to find a balance. The balance of his uniqueness and survival. We don't want him to loose who he is. The Autistic Dregon is who he is and not what's happen to him. We are searching for a happy combination.

Which is a learning process and we learned a new lesson this week. As much as we love Ms. Sommer; Dregon has come very far with her; we have taken a break. Dregon has been seeing her twice a week since July of this year and in the last month it has been getting more and more difficult to get him there. He would cry while getting dressed, not talk or sing on the way, and completely withdraw while there or just ignore her. Then afterwards not talk to us for a whole day or throw horrible tantrums. It broke my heart because, he is not this little boy. I discussed it with her and we decided to reduce to once a week, well that did not go any better. Then she suggested stopping until after his Autism evaluation; in April. This way he is not over stressed and it causes him not to participate in the evaluation. Plus, get there guidance on what to do. That was what we thought as well but; when this is your first trip on this road; you usually let them make the suggestions; then add your thoughts.

When I think of Dregon and all the possibilities that lie ahead for him; it makes me smile. However, as I look towards the ocean he will have to swim to learn how to make his way in this world; it breaks my heart. I know though, I will not let it take the good. We, as his parents, are set up with what was bestowed upon us in our life to protect and guide him to be all he is and all he can be. That is another reason I have started writing and sharing our journey; so he can always see and read the truth of him.

Oh and what do you see in his drawing?

In my next post I will be discussing the dreaded paperwork, I got more today :( Thank you for reading :) If you have any questions, advice, or a story you would like to share, please do in the comments below. I would love to hear :)