So You Have a Diagnosis.....

I thought it would be helpful to lt people know some of the things you can do once you get (or before you get) your child's diagnosis of Asperger's. So here's a probably-not-complete list. It's just what I can think of now.

1. Take a deep breath. This is a lifelong thing. You will not "Win" and it isn't time to start sprinting. This is a marathon, and you're in it for the long run.

2. Don't panic and run out and try to get your child signed up for 6 different types of treatment/assistance/classes. There's time. Sit down and assess what is most important for your child now. Again, your child will be this way forever. Nothing needs to be super-rushed.

3. Find a good psychologist with tons of experience with ASD children. get his/her advise on what is most important to work on with your child right now. Make regular appointments. Make this person your ally. You need all you can get.

4. Read like you've never read before. Find every book you can about Asperger's and educate yourself as much as you can. Also find as much information as you can on IEPs, Section 504, and IDEA. You will need to arm yourself with as much info as you can. If your child is not yet school-age, start working now with the special Ed people in your school district. They most likely have classes for younger children and you can take advantage of these and give your kid a head start before kindergarten. If your child is school-aged, and the school has diagnosed them, get ready for the IEP. Read, read, read. Ask you r partner to read everything too.

5. If you are going to have an IEP done, get yourself a parent advocate. Every state should have some sort of advocacy support for parents like you. Find them. Call them. Get someone. I waited a year and a half and I paid for waiting that long. Learn from me - get your parent advocate before your first IEP meeting if at all possible.

6. Go easy on yourself and your partner. This is going to be a tough time. After my son's diagnosis, even though we had suspected Asperger's for over a year, I could not say the word "Asperger's" without bursting into tears. Take care of yourselves and try not to snap at each other because life is frustrating and tough. Somehow my marriage has survived, but there were a few times after the diagnosis that i was sure we wouldn't make it.

7. Use your child's psychologist to teach yourself and partner how to best deal with your child. Get "on the same page" as your partner as quickly as possible. This was our biggest problem - we disagreed on how to best deal with Monster's different behaviors and misbehaviors. I was too easy on him; my husband was too picky and strict. There is a middle ground and the sooner you find it the better for everyone involved. Even your kid will be more relaxed and have less behavior troubles if you and your partner can find a comfortable place where each of you can sometimes be right.

8. Try melatonin. I am NOT an advocate of medicating these kids. I know melatonin has some drawbacks. But you can buy 1 mg chewables at any health store. If your kid doesn't sleep, this might help. Of course I have to add that you need to check with your child's doctor first. But the melatonin saved us in so many ways, because my son started SLEEPING. His behavior improved by 50%.

9. Find a support group. There are online ones. There are in-person ones. Try both and stick with the one that makes you most comfortable. I like my in-person one because it is all local parents. I learned more about what was available for my son at the first support group meeting that I attended than I had learned in a year of trying to hunt down my own information. These people are a wealth of knowledge. And they won't ever ever judge you no matter what. It's a nice place to be able to go and be able to talk about your child without having to make excuses for yourself or your kid.

10. Tell everyone. Or tell no one. It's up to you. I tell everyone because I want to teach people. I want people to see my son as a wonderful boy and not as a snotty little shit who doesn't ever listen to his mom and beats up on other kids. So I talk. I don't make excuses for him. I just explain what Asperger's is. You may choose to keep it between yourselves and your child's special ed team and medical team. That's fine too.

11. Take classes. There are classes for parents of children with Asperger's in most major cities. Ask your support group about places near you that offer them. There are classes on discipline, dealing with trouble with siblings, dealing with school, etc.

12. Every day that you wake up, look at your child and thank whatever cosmic power you believe in for bringing this child into your life. Always see the positive in your child and downplay the negative. Appreciate what your child can do and focus on that, and try not to worry too much on what they can't do. If you get a nice support system set up for your child they will be learning what they need to know. You can focus mostly on loving them. Don't think this isn't teaching them something. They need to learn compassion and caring. This is where you come in, and what you will be better at than anyone.

13. Prepare yourself for battle. You WILL need to fight. Schools, camps, after school programs, daycares, etc, will try to exclude your child or cheat them out of their rightful place in the middle of the fun. You know your child's rights (thanks to all the reading you did on Section 504 and IDEA) and you will need to stand firm and not let others make you feel bad for fighting for your child. Your child has rights and only you will fight for them. You will be your child's best advocate. It's the truth. You need to fight. Get tough. It's a rough ride. But you'll have people on your side, and they will be there just enough to give you those little pushes when you need them. But don't expect a lot of help. This is something you have to do. I don't know why. I wish I had more help. But I am doing everything almost single-handedly (Hubby does help but I am the fighter in the relationship, and I am the one who actually believes that fighting for this cause is worthwhile, so I end up doing it).

14. Never stop asking for help. Email everyone you can think of when your child needs something you can't seem to get. Keep asking. You maybe just haven't asked the right people yet. Do the peopl who turned you down have bosses? Ask their bosses. If their bosses turn you down, go to the bosses' bosses. Keep asking. Be persistent. Be a pain in the ass. You know what your child needs. Fight for it.

15. Look into county/state/federal aid for your child. Your child may qualify for social security. Your child may qualify for medical assistance. Your child may qualify for free well-child visits. For most of these you will need a medical diagnosis (as opposed to a school diagnosis), but they are out there and you should ask for them. You can get money to help pay for social skills classes or therapeutic riding. Start asking your county, state, and country what aid they can provide for your child, and how do you get it? This is not a "COOL!! GIMME GIMME GIMME!"-type thing, but it gets DAMNED expensive to pay for all of the special classes and testing and other extra stuff you will want to get for your child to give them the best chance in life. It isn't bad to ask for help if it's going to improve your child's life.

16. Forget what your life used to be like. Don't dwell on it because that life is gone forever. You're in the trenches and the only way out is through. Hang in there. Ask for help. Seek out understanding friends and dump those who cannot understand your child's special needs. Don't let anyone blame you for your child's disorder. Don't let anyone blame you for your child's behavior if you really are doing your damnedest (and 99% of us are). Some people will not be good frineds to keep around. Say goodbye. You need to find yourself the shelter of good friends and relatives who either understand or at least make the effort to.

17. Hang in there. In your darkest hours (and you will have them) remember that tomorrow your child will do something that will make your heart soar, and so you need never lose hope. Our children are amazing and wonderful and we are lucky to have them in our lives. We are. Trust me. Keep your sense of humor, or find one - fast. Learn to laugh at the things that you used to cringe at. next time your child creates a huge scene in the supermarket, just giggle and keep on going. Ignore the stares and whispers. Smile at those who dare to glare at you. Who CARES what other people think? Stop caring. THEY DO NOT UNDERSTAND and so they will judge you. Stop caring. You know that you are a good parent. They can all walk around with their heads up their asses. You are a member of a secret society now. Be proud. You have knowledge they will never have. Hold your head high. Don't EVER let anyone - another parent, a teacher, a principal, a doctor, make you feel ashamed because of your child.


I guess that's it for now. Good luck. Life is good. Trust me. It's good.