It's almost been a year since we heard the words, "your son is on the autism spectrum" and I can truthfully say it's been a roller coaster ride. My world felt like it was crashing down right before my eyes and as each month went on I realized how much I never thought about all of the people around me who have gone through, or are going through the challenges of having a child with a disability. I guess when things are fine you really never give it a second thought, you think everyone's lives are just like yours. That's why I wanted to give some insight into what it's really like, from my perspective at least. It's not for pity but for understanding, because even though there are many things parents like myself face, we also have so many blessings that our children give us that I would never give up. So here's the good, the bad and the ugly!
THE GOOD:
1. You learn to appreciate the little things... I remember when JD first said the word train I was so excited. We must have worked on it for months. He was so proud of himself, and I was so proud for him.
2. You start realizing that life isn't all about you or your family.... when you are in and out of doctors offices every month you see things that make your heart sink.
3. You have to let the little things go... and for me that meant control. I couldn't control what happened and couldn't change it, but I learned that's ok.
4. You get to become an occupational therapist, a speech therapist, a behavior therapist... the list goes on and on. You have to learn about sensory integration problems, listening therapy, diet alternatives, neuro treatments. And hopefully you can learn it overnight because it becomes your life before you can even blink!
5. Your heart grows, and not just for your child... all of the people you meet that become a part of your life - therapists, friends, other ASD parents, nannies - you love them like they are family.
THE BAD:
1. You blame yourself everyday... If I didn't take this med during pregnancy, or if I spaced out his shots, or caught it earlier... everyone can tell you that it's not your fault and you know this, but you still think in some way it must be.
2. You wonder about the future... what is his life going to be in a month, a year, in 20 years? Will he talk, play sports, get married? Things you always just assumed would happen become things that may not.
3. You become a referee... everyday you deal with tantrums and as JD grows bigger they just become harder to control. You get hit, bit, slapped, clawed, hair pulled. It's like ultimate fighting some days.
3. You wonder how your other children feel... how much do they understand? How do you juggle your attention equally? Are you doing enough for everyone?
4. You compare your child to "neuro-typical" children when you see them out and about. How far behind is he really? I think sometimes I forget and then I'll see another little boy JD's age and it's like a being told he has ASD all over again.
5. You get mad because nothing is easy... you watch other moms who just take their kids everywhere and can do anything and you know that's not your life. Your life is about therapy, schedules, routine and wondering off that path can lead to a very bad day.
THE UGLY:
1. You get mad at God, really mad. I think every parent with a disabled child does this, it's just part of the healing process. But I think God can take it, he knows we need someone to be mad at.
2. You feel like no one understands what you're going through... family included. Unless they have a child on the spectrum, then you know they just don't get it.
3. You wish things were different... this one I hate. I love JD just the way he is, but sometimes, just sometimes, I wish we had an easier life. I wish for him that things were easier because it's not easy to see them have it so hard.
4. You take it out on your spouse... probably because you can only take it out on God for so long. Luckily my husband rolls with the punches and is there for me no matter what.
5. You cry, A LOT... at least in the beginning. It does get easier, but the evaluations never do. No matter what I always cry after an evaluation - it's like getting hit with a bus.
I will say that each day life seems to get a little better. Maybe I worry less or just love more. ;-)
