Diary Of An Autism Mom #3

Today is National Autism Awareness Day. We are lighting it up blue as a family for our sweet Ian of course. Also we light it up blue for all those other families who are affected with Autism we know. Along with many other families in the world we are blessed with a special child in our home who lives with Autism. This is my 3rd Diary entry as a Autism Mom. I have written many other posts on Autism and how it affects our lives. I hope that they are all helpful and leave you all with a better understanding what Autism is. Before our son was diagnosed I had heard of Autism, but didn’t have a full understanding of what it was for sure. Now we live Autism 24/7 in our house. We do sensory, meltdowns, we have tears, we have smiles, we have giggles, we do spinning, we flap with excitement, we worry & stress, we pray often, we communicate differently, we hope for tomorrow to be a better day, we have done sleepless nights, we do IEP’s , we love each other and never go down without a fight.  We are in this journey of Autism with Ian together. We don’t know how we could do it alone, and are happy we don’t have to know.   I wanted to share with you all about some of the struggles we have had thus far with our sweet Ian. Not because I want you all to be sorry for us. That is not the reason why I share these posts at all. I share them because I want to help those around me, those who read these posts to understand Autism. I also want to help those who are also going through this journey of Autism to know they have support. That they are not the only one who is going through this.

Communication:

Our Ian had about a handful of words at the age of 1. Right at about 18 month, Ian lost all of his words completely. It was very strange to us, so we consulted with our Pediatrician. We decided together to get Ian into a speech therapist. After a few months we were not seeing the results we wanted with Ian. This was when our speech therapists referred us to a different therapist in her office. This SLP had more time on her case load and had worked with other children with Autism. Not knowing our Ian had Autism at the time though for sure at the time.That was almost 4 year ago. Ian is non-verbal or pre-verbal still  today.  He will say a word randomly and sometimes surprises us by saying a word in the right context. Ian uses some sign language  as well. When Ian attended an ABA clinic for 2 years before elementary, they introduced us to PECS. It is an picture exchange system that has worked really great with Ian.When he gets frustrated we can go to that book. Using pictures her can try to communicate his needs to others.

Ian also uses a picture schedule at school as well. He lives by that schedule at school. It helps him have a smooth running day, with the many transitions he takes through out his day. Ian struggles to communicate his needs often. He gets frustrated and it’s very sad & frustrating for the person he is trying to communicate with. A lot of the times Ian has meltdowns because of this challenge. It is extremely hard to see him go through these communication struggles. Today we are seeing lots of trying to communicate (say words) to us. He watches our mouths very closely when we are talking to him. Along with our mouth saying a word he moves his mouth and works so hard. At times a word will come out, but others it’s just mouth movement. Ian has those words in there somewhere, and understands them. He just needs to learn to say them. Ian can nod his head yes & no as well. These tools and communication growth for Ian have been extremely helpful. We hope and pray that someday our sweet boy will be able communicate his needs and wants so that everyone can understand him. Communication is most defiantly our biggest struggle with Ian.

Sleeping:

Ian was a terrible sleeper as a baby. He slept in our bed often with us as a baby. I know that they tell you not to do this, but we were in survival mode for sure. This continued on for quite some time. We tried to sleep train him as a 1 year old. It was a huge nightmare!  He could cry and cry, then scream until someone would pick him up and rock him to sleep. We were functioning on very little sleep. We were all tired. We didn’t know any different because Ian was our oldest. It was very rough on us new as new parents.

It was like Ian couldn’t shut his brain down at night time like the rest of us. Our bodies naturally make melatonin, and I swear Ian’s does not do this. We consulted with our Pediatrician again, and began giving Ian Melatonin drops or pills before bed. This helped some nights but others it did not. It was taking a lot of melatonin to get that sweet boy asleep at night. Today, Ian see’s a developmental Pediatrician who has prescribed a different medication for Ian, to help with sleeping. This has been a miracle pill for our family. We have a sleeping house again at night. We are all happy campers now.

Social Skills:

Ian struggles playing with other children or pretend play. When Ian was just a year old I remember going to play groups with friends, and those friends mentioning to me he never played with the other kids. (This was before Ian was diagnosed.) He would take a toy and go in a small corner and play with a toy all on his own. Friends would say, ” He’s so cute just playing all on his own.” My husband and I just thought ,”well he’s an only child now, that’s all he knows.” He plays with us sometimes but would rather play alone. Ian continues to struggle with this skill. He is so good with his little sister though. She works so hard to play with Ian, and loves when he pays attention to her. I love when they will chase each other around the house, or have dance parties together. I love when we tickle Ian ,and he wants to tickles us too. This will be a consist skill that Ian needs to work on for a while. A constant reminder is to those who don’t know this would be to go play with them. Enter Ian’s world for him to play with you or do what he is doing. Go to him and have him look you in the eyes before asking him a question.

Change: 

Change in a transition, a sub at school, different class room he’s never been in, or a stranger he’s never been around before can throw Ian off. When I was pregnant with our second child I was going to school online. I was doing my practicum for my education degree. I had friends keeping Ian for me a few hours as couple days a week while I was gone. It was a huge change for Ian. He cried and fought staying at these two friends of mine’s houses. It took a while for him to get use to it, but when he did he did great. The older Ian gets the easier this struggle is becoming.

Ian has new and changing struggles and challenges because of his Autism. Although challenges will come and go, Ian is amazing at so many other things. Ian is amazing at making others smile, he is constantly happy and he finds joy from simple things in life. There is nothing better then a happy Ian. Ian is an amazing swimming. Ian loves the water, and is able to go swimming twice a week since starting Kindergarten. This has been a great blessing in Ian’s life. Ian is a wonderful problem solver. If he cannot communicate to you what he wants through words or you guessing what he wants. He will find a way to do it himself. Ian has learned to write his own name this year in Kindergarten. He is learning to write other words. This was something I was not sure was possible. “It takes a village to raise a child”, and this is a very true statement. Ian is growing and learning not just from things we teach him at home. He has school aids, school teachers, church helpers/teachers, grandparents, cousins, aunts/uncles, cousins, a sister and many others in the community who have helped our sweet boy grow and learn. Ian will be different from many children around him, but because we have had such a supportive community, family & friends that are accepting, Ian is very loved. Autism and all. If you take one thing from this post I would want it to be you are not alone in this journey of Autism. Remember build that support group. Your child will touch many others lives just as our Ian boy has.