Dear Parent,
Your child's diagnosis may have you feeling relieved or deeply saddened. Either way, I have been there. And I will tell you it is a process and it will get better. Here are a few things I wish I could have heard in my early days of our Asperger's diagnosis:
You do not have to become an expert in your child's diagnosed field. You just need to be an expert on your child. You are probably already on your way to learning what helps, hinders and aggravates you or him. There are so many resources, it can be overwhelming. You will eventually find the books or web sites that really click with the issues and personalities you are dealing with in your family. Keep looking until you find the best resources for you.
Find the right medical professionals. We met with several doctors. It wasn't until we found our Developmental Pediatrician that I knew we found the right person who got to be David's doctor. He was the first person who looked at him and instead of listing what he couldn't do, said "He is wonderful. He has a few areas we need to work on. I will help." Do not expect every therapist or doctor or teacher to have this response. But I think it is important to find the person who knows how to deal with your child and you.
Only listen to the people who have the authority to talk about your child's diagnosis. Many preschool teachers said very hurtful things about my son's abilities. It was not their intention to make cutting with scissors or sitting in circle time seem like the most significant aspect of my son's life, but that is how they approached the topic. I took their words with the same weight as his doctor's and that caused me many tears and sleepless nights. I needed to filter the incoming information better and to know the significance of each comment.
You do not have to educate everyone on your child's issues. Only invest your energy in explaining or teaching those who are the influencers and supporters of your child. Resist the need to explain behaviours or therapies to every person who asks a probing question. You will exhaust yourself. It is ok if your acquaintances do not fully understand. You have limited energy. Focus it on your family.
Allow yourself time to process the diagnosis. It hit me in waves of feeling like I had a grip on things and then everything falling apart. You need to work out how you feel about things and how you are going to deal with them. Once you do that, you can better handle ALL the advice and well meaning comments from others.
Try the best you can to let comments from people roll off your back. I think people just want to say something, but half of the time, it is the wrong thing. (Think back to the odd things people said to you when you were pregnant). They have no idea how their words may awaken your own fears and concerns. Or how a few comments questioning your therapies may keep you awake at night as your mommy heart aches, questioning all of your decisions.
You need support. It may be your spouse, your best friends, an on line group or your family. You need someone to talk to about these hurts and successes who will help you see the bigger picture. Who will tell you you are doing a good job. Who will help you dismiss those comments made so casually by people who mean well but hurt your feelings.
It gets so much easier. It really does. Preschool was a horrible failure for us. Horrible. But then I shifted my linear thinking of: sitting in circle time = being able to handle kindergarten = success in elementary school = middle school and high school going well = getting into college = being able to hold down a job and provide for a family = having a lasting relationship with a spouse and having a fulfilling relationship with his own family. That is a lot of pressure to put on being able to sit in story time! Your expectations will adapt to the diagnosis. Somethings become less important and others become new goals.
It gets easier because you get better. You are going to keep getting better at parenting, at therapy, at adapting, at handling even the moments of frustration. My expectations slowly changed. They are not lower, they are just different. And the more you hesitantly mention how certain situations do not work for your child or your family, the more you will be amazed when people say, "Us too!"
Finally, I will share my biggest moment of learning: to be thankful for our diagnosis. We were going for yet another hearing test. I was frustrated that our doctor sent us to a new test or lab every week. It was exhausting with a 5 year old and a toddler (and Atlanta traffic). I was muttering to myself as I rolled that double stroller over my own foot. Then I looked up at the building in front of me. It was a hospital. For children. Most of the parents sitting next to their children in that building would have traded places with me in diagnosis in a heart beat. I was thankful that I heard Asperger's and not many of the other things they had tested David for in the past 6 months.
These are things I found helpful. I hope a few of them may feel helpful to you, too. The photo is of my husband and my 3 boys. I never would have imagined David being able to ski and do all the things he does today 10 years ago.
If you have something to add to the list, feel free to write them in the comments.
Well said!
Posted by: DL Harmon | 07/14/2013 at 10:45 AM