A few years have gone by now since Jacob's diagnosis and although the challenges are still there, I feel like we are more adjusted to our new way of life. Things are crazy almost all of the time, but I can make plans now and sometimes keep them. I can function without feeling completely scattered and I can reflect back on some amazing things that have helped me get through these times. I can also remember some not-so-amazing things.
I hear from many parents who's children have recently received an autism diagnosis and I can absolutely relate to the stress, frustration, fear and all that comes with it. Friends and family ask you how to help, but you become so emotionally overwhelmed that you cannot even seem to form an answer, much less have the energy to ask for help. So, here are my top 10 ways that people have helped me and I feel like it made a HUGE difference to our family.
1. Don't stare during meltdowns, strange eye movements or hand flapping, or when we have to turn our child's head to focus and speak in a funny way to them. Rather, ask us questions. Autism parents LOVE to inform people about autism because we LOVE the idea of people learning to accept and understand our babies. Don't feel like there are any dumb questions either, asking questions translates to caring.
2. If you want to help with babysitting, sometimes it easier to babysit at our house. People have offered to babysit my son, but don't realize that he will be highly agitated in a new environment. Its hard to say, "Yes, but can you come babysit at my house?" If you want to babysit, sometimes offer babysitting at the parent's house.
3. Offer a play date between your typical child and our children with autism. This is an amazing way for us to teach our children social skills and for our kids to feel loved and accepted by their peers. There is also an added benefit to your child. You can talk to them about children with special needs and being understanding and accepting. These are valuable lessons for all children. Don't be scared that your child will mess up or say something wrong, trust me parents of children with autism are quite used to awkward moments and extremely forgiving.
4. This is a biggie. Please be understanding when we have to cancel plans last minute. Children with autism often have meltdowns that are hard to calm, have anxieties in certain places, and many other things can arise last minute. Be aware that there are simply some places that we won't even try to bring our kids. For us personally, its places by lakes or pools (that we aren't swimming in) and certain places that one of us has to run full speed to chase Jacob the entire time. BUT please don't stop inviting us places. There may be that one day that we actually can get out and have fun and trust me, it will mean the world to us.
5. Don't pretend like they aren't there. Make sure you say "Hi" or "Bye" to our children with autism, even if they don't say it back. In church, there are a couple women who make it a point to stop and look at Jacob in his eyes to tell him hi. It is so unbelievably kind to me that they show him this respect and kindness.
6. If you want to hang out, sometimes its easier to just come to our house. My best friend often grabs some snacks at the store and just comes over to hang out with me and laugh and eat snacks. She knows I can't leave Jacob much and is so considerate to want to spend time with me even when I can't go somewhere special. This really helps me to unwind and feel like I have had some friend time without having to leave my house.
7. Please know that answering the question "Has he gotten better?" is a really tough thing to do. Autism doesn't typically go away. There is no known cure for autism. So for many families, some things get much better, while a lot of other things start getting worse. Instead, you may want to ask how they are doing or if they have learned any cool new things lately. Also, please don't avoid asking how our child is or questions about them for fear of an awkward conversation. If your desire is to show that you care, asking questions is a excellent way.
8. Cry with us. This is for our family or close friends. There is a time to encourage, but you'll know and you'll see it in our eyes when we just need a good cry. Don't say, "It's ok, don't worry." Because often that makes the person feel like they should suck it up. If you can see they need to let something out, just be there. Maybe just agree that its hard and let us get it all out. Sometimes a good cry is just what the doctor ordered.
9. On the flip side, when we call you panicking about the time our child rubbed poop all over the window or when we had to chase our child through the house because they refused to put their pants on while the repair man was there, please be EXTRA silly and help us to laugh! This really is the thing that has helped me the most. My best friend almost daily has to remind me of the humor in most situations I call her about. Sure its super stressful and scary, but you either cry and panic about everything or you learn to laugh and just go with the flow. I love being able to call her and know that she is going to make me giggle about the things I've gone through that day.
10. Please don't send us research studies or the latest heal-autism-quick advice. Chances are we have already read it. Autism parents become research experts and are ALWAYS reading studies and finding tools for our children...ALWAYS. Instead, send us encouraging emails or prayers or feelings of concern, that really means the world to us. Recently, after the wandering occurrence, I received a kind email simply telling me that someone has been thinking of us, and it made my day and I know I can say the same for my husband. Autism sometimes makes you feel very isolated from the outside world, so notes of encouragement remind us that we are part of the outside world. :) There have also been people who have told my daughter how important she was and what a great job she was doing being a big sis. Jacob has some serious needs, so balancing attention is a VERY hard task. Someone else showing her support made her feel very special and happy to get that acknowledgment.
So, that is my advice. It may not be exactly the same for everyone, but these things sure help us out a lot. I know there are many friends and families out there hurting for their loved ones who are going through this difficult time. I wanted to give them some practical advice to help. Please share if you know someone who may need it.