What Autism looks like in our world 💙

Some of you may know but for those who do not, August 2018 our son Daniel was diagnosed with mild Autism. It did not come as a surprise to us as we’ve been through ongoing therapy since he was 18 months old. As all children on the spectrum are different, I thought I’d share a little bit of our life with Autism.

What were the signs that we saw that led us to look into therapy? Well, by 15 months Daniel was no longer saying single words. He starting to regress in speech. He wouldn’t respond to his name. He wasn’t happy with others joining in his play other than Dan and I. He wouldn’t point to objects. So we reached out to the early intervention program through our county and it was the best thing we could have ever done.

We were assigned a special instructor. She would guide me in ways to help Danny cope with the needs he needed met. She educated me on what was going on with him and gave me strategies to use. Then, we were assigned to a speech therapist. She would also give me strategies to use to help Danny communicate in our everyday life whether it be elongating vowel sounds, using sign language, or simply using silliness to grab his attention with 1-2 words. Further into the program, we noticed Daniel needed an occupational therapist. She helped us with fine motor skills and educated me on the sensory needs he was seeking and what we could do to help him focus.

Since Danny turned 3 we are no longer in the early intervention program. It is designed to be a parent/family based training model till his 3rd birthday. Now that he is 3 he will go into the next phase which is the intermediate unit where they will meet us at educational based environment (library) or his school. They prepare to help Danny educationally now to help him prep for preschool.

Daniel is on the mild end of the spectrum. Unlike children on the higher end, he does not self injure, he does not injure others, he typically is not bothered by loud noises or crowds of people, he is not sensitive to the touch, and he shows affection. 💗

One of the things Danny craves most is CONSTANT sensory seeking. There are sensory seekers and sensory avoiders. There is proprioceptive input activities (sensations from joints, muscles and connective tissues that underlie body awareness) and vestibular input activities (the sense of movement centered in the inner ear.) While he seeks both he more so seeks vestibular input.

Some examples of what he does to satisfy the proprioceptive input are lifting a watermelon up and down (or anything heavy), playing tug of war, purposely crashing himself into a couch or cushions (soft), slowly crashing himself against a wall (solid), rough play, sitting under his weighted blanket, joint compressions, and chewing on a chewy tube.

Some examples of what he does to satisfy the vestibular input are swinging on a swing (literally for 30 minutes sometimes), being upside down (his favorite), hanging on a ledge to let his feet dangle, jumping either on a trampoline or hard surface, being flown around the room while looking down, and going through obstacle courses that involve climbing, crawling, sliding, etc.

Danny loves the sand, walking in the grass barefoot, and walking on rocks barefoot. He can spin in circles for minutes without getting dizzy. When he stops going around he stands in one place to watch the room move while he doesn’t. He just craves this stuff ALL DAY long.

While some days are easier than others, some days I get so drained because it’s never enough for him. Its physically and emotionally hard. But you might be asking yourself why does he NEED to do all this? Once Danny’s needs have been met physically he is more responsive. He listens, hes calm.

The hardest part of this journey for us is the communication end and seeing him not socially engaging with other peers.

Danny doesn’t typically respond when I ask him if he is hungry, or wants a drink, or do you have to go potty? We have to ask him multiple times, and use a form of sign language to get a response. And that’s okay!! But I pray one day he can tell me these things other than me trying to get a yes or no answer. Some days I purposely act “stupid” like I don’t know what he wants because I’m trying to get him to by himself tell me.

As he will play side by side with a peer he will not play with them one on one without adult directing commands. His version of saying “Hi.” Is making a loving noise while petting their arm or head. We are working on it. He does better with “bye-bye” as he waves and makes the “i” noise. He has come a long way since day 1, I can only hope and pray he gets more interested in playing with friends. I worry so much about preschool, kindergarten, elementary school. Will he have friends? Will he get bullied. It haunts my conscience.

Being on the spectrum has brightened up my life as a mother. It has its low lows… for sure. But it also has it’s high moments. As milestones haven’t been in our life since he was 1 1/2 we are blessed to see the little things as the biggest milestones. Eye contact, saying a single word, showing apologetic body language.

Having a child on the spectrum is in deed more work as a parent. In the beginning stages of this journey there would be days I would do nothing but cry. Cry by his bedside as he slept and beg God to help our child communicate. Beg for this not to be happening to me. I would feel as if I was cheated as a parent. I would question everything I did from prenatal to beginning stages as a parent. I always look my vitamins pre and post pardum. I didn’t understand, why me? I had a 95% organic diet. He was breastfed and after that organic formula. I made all his purees from fresh organic fruit and vegetables. I just didn’t understand what went wrong. As there is no real reason why some children have autism its humane to start to think and blame yourself for things you might have done wrong.

For the family and friends who always supported us and stay by our side we are so grateful. For the friends who still bring their children around Danny despite his differences you have no idea how much it means to me. You know who you are. Thank you from the bottom of my heart.

Autism does not define him. It doesn’t change our love for him. It doesn’t label him. I will always be his voice when he needs me to be as love needs no words. 💙