More Autism Parenting Surprises

There are so many good thoughts people have shared about what surprised them most about raising a child with autism. I've added more surprises other moms felt so others can benefit:

1. How some people out in public can be so very nice and helpful, while others can be so unsympathetic.
2. Although there is lots of hope, I had no idea how long ahead the road would be -- the cost, uncertainty, isolation, difficulty of keeping the kids safe and the confusion over treatments.
3. The isolation of not feeling a part of the community of typical parents.
4. The battles you will fight for your child at school, how you have to become a legal expert to get the services needed. You will sit in long, painful meetings with the school and often just have to agree to disagree. In some instances, you are blessed with principals and teachers who get it!
5. It'll amaze you how much you need to know about the brain and how much autism can be a brain-gut connection. You have to do all the research and work tirelessly to heal your child.
6. I was surprised by how "stressful" this would be on the entire family.
7. I was surprised at how pervasive this would be and thought, naively, that the speech delay would be essentially the only concern.
8. The stimming really shocked me -- the verbal stimming, the visual -- and that it would seem worse in some ways as they get older and it stands out more.
9. A pleasant surprise -- I did not know how connected parents of autism children would be -- that so many parents would be working together to share ideas, to help others and to beat this thing.
10. I was shocked at how hesitant to talk about autism my pediatrician was or how little they know about autism. Most parents end up telling their pediatricians they have autism.
11. I was surprised there was not a one-size-fits-all treatment plan that would cure autism. A parent has to dig through dozens of therapy options, from Floortime to ABA to biomedical treatments, and sort out how much and how fast you can spend on it.
12. I was amazed how slow experts were to point you in a particular direction. I once sat in a developmental pediatrician's office for over an hour while my child with autism flapped his arms at the lights and the crinkly paper on the table. Not once, did the doctor recommend occupational therapy or biomedical treatments or even a basic sensory integration treatment.
13. I was stunned at how even grandparents of ours did not know how to respond when my child was having a tantrum or meltdown or just overreacting to the tiniest of things. It can feel very isolating within a circle of extended family to be dealing with a child with autism.
14. I was in disbelief that there were so many good success stories out there in dealing with autism and yet it took me years to gather the information.