Today I am participating in a blog hop. Kelly’s Korner is hosting a blog hop specifically for parents of special needs children. As parents with special needs children, it can be difficult to connect with other parents who understand what we are going through. Kelly’s hope is to connect parents of children with special needs with other parents who have similar challenges. I have met a lot of great people online who have helped me in one way or another with the different challenges that come with raising a child on the spectrum. Hopefully I will continue to meet people or my story will help someone else going through similar issues.
Christopher is 10 years old. He has severe autism. He is non-verbal. I started to notice a difference in his behavior right before he turned two. When I say difference in behavior, I mean I noticed he was different from most children his age. He was always delayed with milestones and he had a lot of unusual quirky behavior for a child of his age. I know when I just say it like that it doesn’t sound like a big deal, but if you saw the things he was doing and how obsessed he was with doing those things….
At his 18 month check up, his doctor asked me if I was concerned about his development. I knew he was behind, but I wasn’t too concerned about it at that point. Somewhere between that check up and his 2 year check up, I started to get concerned. He wasn’t responding to people very much at all. He wasn’t trying to develop his communication skills when he needed something. Most kids by age 2 would try to verbalize their needs using words, but Chris still got our attention by crying the way an infant does.
I Googled some of the symptoms that concerned me and found an article that listed 9 characteristics of autism. At the age of 2, Chris had 7 of the traits on the list. I printed that article and brought it with me to his 2 year check up. The pediatrician spent a great deal of time with us. She preformed a hearing test. She gave us further instructions on where to go to get additional testing done. She suggested the possibility of autism, but wanted a neurologist to give us the final diagnosis. We had several tests done and like most autism cases, the tests all came back normal. The neurologist confirmed our pediatrician’s fears and my fears as well. Chris had autism.
We started speech therapy and occupational therapy right away. The therapists came to our house for almost a year. My husband’s job transferred us to another state. He started getting services from the school district when we moved. We were seeing some results, but nothing over the top extraordinary. About the time he got his 4 year shots, he got a new teacher. There was a lot of regression during that time. I started to notice that anytime there was change, he would regress. He also seemed to have the attitude that once he knew how to do something, there was no need to do it anymore.
Today he is 10 years old. It has been a while since we have seen significant progress in Chris. The good news is he is mostly happy. He is beginning to develop some aggression issues at school and we are trying to figure out how to deal with that. Hopefully that will stop now that it is summer vacation. He will attend the extended school year program which begins in July.
I’d love to hear from anyone who has a special needs child. Even if you aren’t dealing with autism, I’ve found we may not be dealing with the same diagnosis, but there are still some things that might be similar. Thanks for stopping by!
Jennifer
For Mother’s day, my daughter wanted to take me to see the movie Mom’s Night Out. I loved this movie. It’s about a mom who is at her whit’s end. She has the life she always dreamed of, but for some reason, is not happy. Most of us moms have been there at some point. Before I had children, I had a list of things I couldn’t wait to do with my kids as a family. That dream was crushed when my son was diagnosed with autism. Only, I didn’t realize it right away.
Doctors, therapists, social workers, family members and friends all told me early intervention was the key. “Do the intervention and everything will be fine.” they said. But so far, that has not been our reality. After his diagnosis, I focused on his therapy sessions. I believed if I focused on his therapy, one day, everything would be fine and I’d have the family I had always dreamed of.
I reached my breaking point shortly after we moved out of our home state. For a while after we moved there, most people didn’t know my name. They’d call me Desiree’s mom or Chris’ mom, or they’d call me by my last name. I woke up one day and I didn’t know who I was anymore. Everything I liked was because one of my kids liked it. Everything I did was because my kids wanted to do it. I couldn’t think of anything I liked that was just mine and no one else’s. I began to feel like I didn’t have any identity other than that of “mom” and “wife.”
I knew that because I had a special needs child I wasn’t going to be able to do the things I had always dreamed of doing with my family. I also knew I couldn’t go on feeling the way I was feeling. I had to re-define myself and my ideas of how a family spends time together. I had to find new interests. Most importantly, I had to find interests that included children with special needs.
I looked up different events going on around town and attended the ones we could. I attended more events at our church. I did some volunteer work at my kids’ school. I volunteered at the local animal shelter. Shortly after the birth of my 3rd child, I joined a mom’s group. That was probably the best thing I did for myself, because there were always new members looking for new friends. I started attending mom’s night out events. It felt fabulous to get away and have my own identity even if it was for a short time. I was trying to re-invent myself and had no idea what my likes and dis-likes were. I did as much as I could in an effort to figure out who the “new me” was.
Back to the movie. The mom was spending so much time beating herself up because she couldn’t keep up with the world around her, she was making herself miserable. The mom in the movie hadn’t gone out in ages because she felt so guilty about leaving her kids. She felt so bad that her house wasn’t clean all the time. She sacrifice her sleep to clean the house before the kids woke up. Why do us moms do that to ourselves? Even in an air plane they tell you in an emergency, put the oxygen mask on yourself first THEN put the oxygen mask on your child. You can’t safe your child’s life if you are dead because you didn’t take the time to put your own mask on first. It’s so important that us moms learn to give ourselves the time to take care of ourselves without feeling guilty. It’s so important we put our oxygen masks on first.
My middle child is 10 years old and has classic autism. He will not speak, he could if he wanted to, but as of yet, he has no desire to utter a word. He is dependent on us for everything. Imagine an 18 month old in a 10 year olds’ body. There are a lot of reasons for me to allow myself to let his autism get the best of me and make me miserable. I choose not to allow that to happen. In the beginning, it was hard. I fought every single day to find happiness. I made myself get super excited about something that seemed so small. It was a lot of effort on my own part. I was determined to not allow this to make me a bitter person. So here is a list of things Autism has taught me.
- Autism has taught me how to find joy in life. I take pride in the smallest achievement. I focus on the things he can do. I focus on his happiness.
- Autism has taught me to appreciate what I have. I’ve learned that any house in any location can be made into a home if you make the choice to allow it. Friends will be there for you when life circumstances has separated you from family members. The key is, it is up to you to put yourself out there and make yourself known.
- Autism has taught me to accept that which I cannot control. As I stated before, my son is dependent on us for everything. One day, we aren’t going to be here to care for him. My support group is made up of adults. Chris is going to outlive everyone in my support group. Who’s going to take care of him then? I can make arrangements for him to receive care, but when I’m gone, I won’t have any control over the quality of care he receives.
- Autism has taught me to accept kindness from others. People have seen Chris in public places and have offered a word of praise. Most times, these are people who also have children with autism.
- Autism has taught me to be stronger. My son doesn’t speak. I have to be his voice. If someone mistreats him, I have to speak up for him. I have also learned how strong other people can be.
- Autism has taught me to see love in different ways. My son can’t say, “I love you mom.” But he can show me he loves me. A quick tap on the shoulder is a sign of affection from my son.
- Autism has taught me to be patient.
- Autism has taught me that a lot of people are caring and have the desire to understand. It has also taught me that some people don’t care nor do they have the desire to understand.
- Autism has taught me to have a conversation with someone only using body language.
- Autism has taught me to accept other people’s opinions better. Because he is non-verbal, I have no clue what Chris’ opinion about anything really is.
- Autism has taught me to learn to give myself a break. When you’re trying to get your autistic child to do something, it can be very frustrating. The child gets frustrated when they don’t understand what they are doing or why they are doing it. You get frustrated because you know they could do the task at hand. You eventually reach a level of frustration where nothing is going to get accomplished and the best thing to do is step back and take a break.
These are just a few of the things I have learned on my journey with autism. I imagine there is so much more I have to learn. If you have a loved one with autism, or any other disability, what have you learned?
