Change is something that happens in life. Sometimes we make it happen, and other times it’s unexpected. Either way, it’s an important part of life! Without change, life would be pretty boring. Change helps us learn new things and to grow as an individual, and it can bless us with new and exciting opportunities! For those times when change is more difficult, it strengthens us and can make us more determined.
I am very familiar with change. I welcome the positive changes and try to look at the more difficult ones as a challenge. And I really do understand those times where life throws you a curve ball – you see, I am a mom of a 9 year old boy on the autism spectrum.
Not unlike any other parent, when my son was born, I prayed that he would be healthy. Counting his ten fingers and ten toes and having the doctor reassure me that he was a healthy baby boy – it’s the best news any parent could get! As time went on, there were ‘red flags’ that started to appear. Signs that said, as parents, we needed to be concerned. The signs were right and at the age of four, the doctor shared the four words that I feared the most, ‘your child has autism‘.
At that moment, life as I knew it, changed forever. Like so many other parents I know, I actually grieved. I didn’t grieve the loss of my son per se, as he hadn’t gone anywhere and he certainly hadn’t changed from who he was before I heard those words! I grieved more for the dreams and hopes that I had for my son. What I knew about autism at that point was minimal, and I was scared of what life was going to be like! I figured that there was something that I had done to cause my son’s autism, and blamed myself for quite some time. Eventually, I stopped blaming myself and realized that it was nothing that I did, but I also realized that it was time to start figuring out what needed to be done to help my son reach his full potential. Life was going to be a lot tougher in many areas, but I was ready for the challenge.
After 15 years in the workforce, my husband and I decided that I would stay home with my son until he went to school. At that point I would return to work. The news of his diagnosis meant that as a family we needed to do some reassessing. We had a lot of questions and not very many answers. We decided that I would remain a stay-at-home parent. It’s not really what I had planned for my life, but as a parent, my son’s needs came first. If that meant leaving the workforce permanently, then so be it! I looked forward to this new challenge and spending more time at home with my son.
Autism brings a lot of challenges to a family. Here is one of those times that though change may not be totally welcome we have no other choice but to accept it and deal with it. It was definitely going to be one of those times that what we were facing was going to make us stronger!
Financially, autism can take a huge toll on families. Like us, many times families need to have one parent leave the workforce which means a considerable change in the family’s income level. This in itself can bring about a great deal of extra stress. Therapies and treatments for autism are extremely costly and unfortunately many are not covered by traditional insurance coverage – at least not where we live. Families are having to remortgage or sell their homes and use any savings they have in order to try to get the services that their child needs. And even at that point, families have had to declare bankruptcy as they have gone so far into debt there is no other option.
Have you ever thought of yourself as an advocate? Well, if you are a special needs parent, you are now an advocate too! As a parent, you have been thrown into the world of advocacy and you will need to learn the most effective ways to be the voice for your child… at school, with medical professionals and in the community. In our case, if I didn’t do it, who would? As an advocate I am very determined and I do what is needed to ensure that his voice is heard. It doesn’t always make me the most popular, but that’s alright with me. My son’s voice is heard when and where it needs to be. I truly feel that sometimes this is a full-time job which is frustrating when, according to the CDC, 1 in 88 U.S. children are somewhere on the autism spectrum. Society should be more aware, more accepting and more understanding! So be prepared to advocate and fight for just about everything that your child needs or, you feel, is entitled to.
For our family there has also been a huge social impact. I don’t like to say this, but the reality is, that unless you live the life of a special needs family, it’s very hard to understand what life is really like. The stresses… the uncertainty… the challenges! Society makes it difficult on many levels to live with autism, but other special needs as well. On a personal level, one of the hardest things that I experienced was losing friends. Those friends that didn’t understand the demands on my time. The friends that didn’t understand that I couldn’t just drop everything, call a babysitter and go out for coffee. I can’t just call the neighbourhood teenager as those that care for our son need to have an understanding of his needs and his challenges. There needs to be an understanding of signs that can lead to major safety concerns. There needs to be an understanding, at least in part, of the behaviours that go along with autism, and be able to handle them if they should arise. Eventually, as friends, we slowly drifted apart as our lives just went in different directions. It really became too stressful for me to have to maintain these friendships where I felt I was now having to always explain myself more often than not. However, on the positive side to that, today, I have an amazing group of friends. Many of them are autism moms! These are friends that I don’t have to explain anything to. They are there for me when I need someone to share something with. They are there to socialize, but also understand that it takes planning in order to find someone to look after my son. We are there for each other… no judgements… only friendships!
So, if you should happen to be a new autism parent, or a parent of a child with other special needs, be ready for some pretty major changes in your lives. Autism has taught me to look at life from a new perspective. I am stronger for these challenges that I have been given. I have learned to be a strong advocate in our community. Though it sounds like there are a lot of challenges, accept them and use them to your advantage. I love my son more than anything in this world! Would I take away his autism? No, I wouldn’t! If I did, he would no longer be the loving, funny, intelligent, creative young man that I see before me. A young man that loves animals, creating stories, building Lego, making people laugh, playing video games, and the list could go on. Those hopes and dreams that I grieved for so many years ago, I still have them. Granted, they are a little bit different today, but my son can accomplish anything that he puts his mind to and I am so very proud of him! I wouldn’t change him for the world! By far, he was the best ‘change’ that ever came into my life… our lives!