A few days ago, I posted a meme on our Facebook page about always thinking and worrying about my kids and their future. It wasn’t meant to be anything other than a reminder to other parents (both of typical kids and special needs kids) that everyone feels the same – a near constant state of worry.
But another mom commented that sometimes, she felt pictures like these could be offensive – that if our kids see them, they may think we aren’t proud of all they have accomplished. I felt terrible – I never meant for anyone to feel like that about something I chose to share and I told her that. It also made me think.
When I started this blog and our Facebook page, it was a way to share our lives and spread awareness of autism. I wanted to make people laugh about the craziness that sometimes comes with autism (and I have another list of “rules” to share soon!) along with letting other parents know that black times do end. Maybe not as soon as we wish they did, but they do.
I wanted to let parents know that it’s ok to be tired and frustrated and to ask for help. I have a terrible time with all of this. I let guilt get to me that I should just let roll off my shoulders. I’ve been an autism mom for almost 30 years – you would think it would be second nature to me to take things as they come and let little stuff go. I try, but it isn’t easy.
One of the most important things for all families is hope. Even when behaviors are occurring constantly and you haven’t slept in weeks, you have to have hope. Faith and hope will move the mountains in your child’s life. When you seem to have nothing but tears and anger, dig down deep and find that spark of hope. Your child’s life depends on your own hope.
You are your child’s best advocate. Teachers and doctors may have a bunch of letters behind their names, but you are the expert on your child. YOU! Only you know what sensory issues may be occurring. Only you know what sets of tantrums in your child. You know the dangers your child is unaware of. Yes, professionals can give you advice, but they have to listen to you first.
You have to show them the hope you have for your child. You have to share the dreams you have. Yes, those dreams may have changed a few times, but you still have them. Maybe your dream that your child will have a job they enjoy – whether that is working in an office or working in a sheltered workshop.
Maybe you dream that your child will be able to live on their own at some point. Or be able to travel. You can still dream! Let your imagination soar and then make a plan to help your child reach that point. I’ve had to change dreams for my kids several times, but I’ve finally found the perfect dream for all of my kids – happiness. Yes, I know that sounds simple, but isn’t that what everyone really wants? A happy life?
My hope is that Casey can continue to find opportunities to explore the community and volunteer. She loves going new places and trying new things. (New people, she can do without, but she has learned to handle that, too). I hope that her life is full of new experiences, adventures and things that make her giggle that amazing giggle of hers.
For Rob, I dream of him always having people around him that accept him for the amazing young man he is. I hope he can continue to find happiness in watching clouds float by, watching water flow, ripping magazines and building power poles and trees with his Legos. I want him to always find things that make him smile.
I pray that Mandy and Cory find jobs that always feed their passion for life. I hope they always look for the good in a person’s heart. My dream for them is that they always have faith – in themselves, in each other and in God. I hope they find laughter in every day and that they share those laughs with others.
We have had black times in our family. There were many days that I sat and cried – or just sat because I was too tired to cry. There were screams and broken things and sleepless weeks and constant sameness. But I always had hope – maybe just a tiny glimmer in my heart, but it was there. I prayed and I screamed into my pillow. And I hugged my kids and told them I loved them more than anything.
I told them how proud I was of them. It didn’t matter if it was because Rob tried a new food or that Casey got control before she lost her temper or Mandy had an excellent grade card. I was proud when we made it through the grocery store or when they learned to wash their faces. I was proud and I dreamed for more. You have to do that, too. Always, always dream for more. Your dreams won’t be the same as mine – or even the same for each child.
You may feel at times that you simply cannot handle autism anymore and that’s okay. It doesn’t mean that you don’t love your child – it means that sometimes, life is tough – for all parents! You can be so proud of your child and frustrated at autism. Your feelings are okay – don’t let anyone tell you different.
Hope can be a hard thing to hold on to, especially with autism. Everyone feels hopeless at times. The important thing is that you find that spark in you and let it grow. Hope and faith (in yourself, in your child, in God) are so important in our lives!
Always reach for your dreams!