Diary of An Autism Mom #3

Diary Of An Autism Mom #3 (1)

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.Autism awareness 2   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.

Related posts:

  • Barbara Chapman

    In case you or anyone would like to read about Dr. Temple Grandin, here is her official website:
    http://www.templegrandin.com/
    Have a great day!
    Barb :)

  • Barbara Chapman

    Hi Charlene,
    Your heartfelt article really hits Autism on the head. :) I just finished 14 years working in a Severe Handicapped classroom (okay, 11 years in that one classroom; 3 in others) at a middle school in California before moving here to Texas in Nov. 2016. Our class ran the gamut of students who had very severe Autism to more moderate. This included kids with Autistic tendencies but not necessarily their main disability. It was a great class! Our school district (Murrieta Valley USD) has a really good Special Ed dept. and my teacher is one of the best out there for SH students; people moved into our school district because of what they heard from other parents. I loved every minute working with all of our kids!!! They are the best! :) Their successes were our successes and I always tried to make learning fun.

    I applaud how you’ve embraced your son and what he is able to do. Your family sounds very loving and great! Keep teaching him as much as you can, keep socializing him and introducing him to everything new around you. You probably already are doing this. :) We had one student for his three years there and he went from having bathroom issues and using a closet to “go” and his grandmother, his mother, and her brother (his surrogate father, really) and our teacher worked hard to get him to learn to use a toilet. Cutting his hair was another thing that was scary for him. When he left our class after 3 years, he did use a toilet at school and at home.
    I’ve seen that with other students, too. Make everything fun and a big hooray when you have a success. PECS are great ~ you’ll want to get an iPad with a program that you can program with PECS, too, if you don’t already have one. That’s probably what he will have in school. Teach him as many words as you can and their meanings, and teach him to use the levels you create within each category. He will rapidly learn this, I’m sure. Rewards are a big deal, especially in school, to keep students’ interest and cooperation up. Simple things like getting to play a favorite game for a few minutes can be the best thing. The frustration he has is that he can’t communicate with you and the more tools he has for communicating, the happier he will be. He’ll be able to get his feelings and wants and needs across.

    Abstract things (like understanding numbers) are really hard for some Autistic students. Those are the things your son will need extra help with, like why the sky is blue. How the planets orbit the sun. Share the patterns of how planets orbit the sun by photos in books, etc. Little things like that. Start now if you haven’t already. Keep reading to him and your daughter. Have her read to him, too, as she may already and as she gets older. It sounds like she already is doing so much with him getting him to play. It just takes Autistic kids longer to recognize people and to let them into their world, but it is certainly possible. One young lady who is 9th grade this year, by the end of the 2015/2016 school year (8th grade for her then), I caught her watching and smiling at me towards the end of the year. Of course I’d smile back. She finally let me in! I loved that! Oh, and as you probably already know, one word commands often are best. If we give children with Autism too many commands at once (in a row), they may still be working on #1 while we are giving them choice #6. “Pen, please.” “Write your name.” “Thank you.” “Eyes” (when asking them to read something or focus on something). “Choose a color.” (when you ask them to draw a picture and you hold up three markers). A great way to find out what your son’s favorite color is, too! He will pick it often. ;)

    Writing and learning are often tough for severe students. Often they may never get past a kindergarten or up to a 2nd grade level in Math, but we never want to put limits on our kids, as I’m sure you don’t. But, I’m so glad you are realistic as it’s tough to see our kids struggling. My own son has a medium reading disability and learned his way around it (Scotopic sensitivity/Ihrlen Syndrome ~ wave lengths of flourescent lighting causes words and numbers to float on the written/typed page. It’s a brain-eyes timing issue that can be improved with colored overlays/colored lenses for reading/seeing.). We knew it was a problem in junior high but it wasn’t really diagnosed until I pushed the issue in high school. He had help available in college when he needed it (extra time for tests and books on tape), so I’m grateful for testing!)
    You’ll start seeing where your son is at as he goes to school. By middle school, differences between students are pretty apparent. It’s tough as a parent to be realistic about our kids’ abilities but there are a lot of really good teachers and aides out there (which was my role) who work hard to help your son and other students learn to the best of their abilities. Making all learning fun is the key. :)

    One of the boys (not much of a boy, really, at 13 going on 14 and 6′ tall now! :) ) in our class loves Legos. His parents have bought him a bunch of set of Legos and he builds them at home. He was just getting into photography, too, and had a little camera. I tried to teach him a few things to improve his picture taking (I like photography, too!) Keep finding out what your son is really interested in ~ it could be anything! :) Most kids love music and that just makes dancing around the house fun! And at school! Have you heard of Dr. Temple Grandin? I’m sure you must have. I love how she has gone from having Asperger Syndrome herself and has worked with cattle to calm them by “squeezing them” through gates in a cattle stockyard. She knew to do this because of her own experiences as a person on the Autism spectrum! A weighted jacket helps Autistic people feel “grounded.” They don’t feel pain the way that quote/unquote “normal” people do. The big sitting balls are good, too. And a woopie cushion-type pad with bumps on it helps, too. Sensory is such a big happy part of life! Your son might really like being on a swing set and a mini trampoline, too. Then, there’s Mozart and other musical geniuses… Thinking back to Dr. Grandin. :) Anyway, hope any of this might help with your son. You’ve probably already learned most of this, but I thought I’d put a little of what I’ve learned out there in case there might be something that might help.

    I’m happy to have found your website. I’ll keep checking back often and see what you and your son and family are up to. Small rewards for everything, especially for what he really doesn’t want to do will help. And, as he gets older, keep giving him “jobs” to do, just like your other children. Everybody needs to be needed and to have a job to do. That will help your son be ready for the Adult Ed program from ages 18-21, which I hope is available where you live. From high school onward, students are prepared for working out in the world in jobs that they can do in the Special Day classes (SDC). The goal of all school is to make our kids as independent as possible which ultimately is the best we can hope for all of us. :)

    All my best to you and your family,
    Barb Chapman :)

  • What a lovely story. I always admire people who deal with Autism. My daughter was a special education teacher and had some atuism students. Your road is hard, but you are given extra strength to deal with it. Good luck, I am sure you will always be equipped with what you need.
    What a sweet little boy you have.
    Thanks for sharing at Over The Moon Party. Hope you come back next week so I can stop by again.
    Hugs,
    Bev