April is for spreading awareness to others, so I have decided to post some things I have become aware of since Ben's diagnosis in June 2010. It's been a roller coaster, of course, but I am so much wiser for it.
It's called a spectrum for a reason. Every child on the spectrum is different. Just because my kid does some things neuro-typical kids do, it doesn't mean he isn't on the spectrum. Just because your kid does some things my kid does, it doesn't mean (necessarily) that he or she IS on the spectrum. They are all so different. They have different challenges, strengths, obsessions, sensitivities, fears, interests, talents, and personalities, just like you would find in any group of children. The saying among parents of children on the spectrum is accurate: If you've met ONE child with Autism, then you have met ONE child with Autism. This is why being involved in your child's education is incredibly important. Your child will need things the other children don't need and vice versa. This leads me to something else I have learned, and I learned it the hard way.
Being an advocate for your child means (sometimes) standing up to educators. I am an educator. I am not perfect, but I do believe myself to be a good one and I know I work hard to be effective for all students. When your child enters the school system, you want to believe that everyone will work hard to do the right thing for your child, so sometimes you make the assumption that this is happening. I did all the right things. I observed his first placement, I emailed the teacher regularly, attended the meet and greet and parent night, and went to all the meetings, but Ben's needs still were not being met and I didn't know that for over a year until an ARD meeting the teacher didn't even attend when everything hit the fan.
Even after that, I consented to continue this same placement with another teacher. It became a three-hour PPCD class for my child combined with a full-day pre-school class for school district employees. I should have known right then that it would not be sufficient for my child. Why were the non-special needs children being given MORE time and education than Ben? It still does not make sense to me, and I advise avoiding such classrooms because Ben did not benefit from it and lost precious time and interventions. The teachers and aids were overrun with students and my special needs child who had just been diagnosed (both privately and by the district) had IEP's in place that could not be adequately addressed. I didn't know I could ask for another placement until I spoke with another employee of our district who had removed her Autistic child from a similar situation. They don't tell you what you can ask for, so you need to ask for everything. Don't be afraid or intimidated. If you are unhappy with your child's educational services or placement, ask questions and research until you are.
And pay close attention at those ARD's (or IEP's, as they are called in some places). Push for all of the therapy and interventions your child qualifies for and needs, and don't let them whittle down sessions or time. Read the plan before you sign it. Once, they mentioned that his speech therapy would be continued but did not say they wanted to cut it to twice a month; however, it was on the form the diagnostician filled out as she talked to me. They were displaying it on a screen on the wall, and I just happened to look up and notice that she was changing the amount right before my eyes. Had he met more than half of his speech goals? No, she replied, but they were confident he was "on his way." I stated that I would prefer to cut his speech therapy after he met goals and not before, and proceeded to lock eyes with her until she changed it back to weekly. Just because they seem pleasant and accommodating, it doesn't mean they are doing what is best for your child. Check up on everyone and everything.
Attitude adjustments. After Ben's diagnosis, part of my process of dealing with it was to learn and reflect. My mind has changed about many things, and, as I am a very opinionated person (just ask anyone), my opinions have developed, multiplied, and shifted as well. Just like with so many other things, I find I ride the fence on this one. I am NOT glad my child has Autism. I think he is a blessing, but I think it is NOT. I am far too realistic to spew a bunch of rainbows and glitter about Autism, but I also believe that it does not devalue him or make him any less capable or wonderful than any other child. I avoid sites and groups that glibly assert we should feel fortunate that our children were "blessed" with Autism because it makes them highly intelligent (though I don't believe children are intelligent because they have Autism) and unique. Gag me with a fork. This syndrome is a challenge, an obstacle to overcome; it makes our lives more difficult and it isolates my son from the rest of the world. It is not a blessing, and I wouldn't wish it on anyone.
I love my child more than anything with that to the ends of the Earth mommy love that we don't know exists until we become parents. But I hate Aspergers, even though it is a part of that same child I love so much. It's a difficult edge to dance along. I don't want to change him because I love him and think he is wonderful. But I wish he was not on the spectrum. I wish Autism did not exist. It's an emotional roller coaster that caught me by surprise.
Seek support. No matter how strong you are, this journey is easier with support. Fortunately, I have a very supportive family and Ben's dad is in his life. His dad takes him to school across town so that he doesn't have to ride the bus and have an additional transition in his day, and he takes him to private occupational therapy once a week while I am at work. We have also adjusted his parenting time so that he picks Ben up from school three times a week so that Ben is not in daycare as much.
My family has been immeasurably supportive emotionally, financially, and physically. My parents have helped with therapy and expenses, they keep him so that I get to have personal time on occasion, they pitch in when he is sick, and my extended family has been very sweet, understanding, and patient with Ben. And they all love him, no matter what.
Ben has an awesome occupational therapist and a fabulous PPCD teacher. We have a valuable parent in-home trainer who has greatly helped us, and I am surrounded by intelligent educational professionals who take the time to give me advice and point me in the right direction.
I am fortunate to have this support and I know it. Not everyone has that, and I know this as well. However, I don't know what I would do without the additional support of a group I am in on Face Book. I haven't met these women in person, but through this group, I know them all to be strong, intelligent women who have been and are where I am and understand the emotions, frustrations, challenges, fears, and joys of parenting a child on the spectrum. Despite the support system I have here, I am still the one in the trenches who lives with it 24/7 and who does the bulk of the worrying and the work. I am alone with the tantrums and sleepless nights. I am the solver of the problems, the maker of appointments, the finder of resources, and the asker of many questions until issues are resolved. Unless someone has been in these same trenches, he or she does not completely understand. It's just not possible.
If you are a parent or caretaker of a child with Autism, find people who have been in the trenches. Reach out in your community, online, to me, anywhere you can. I cannot fully explain the difference this group of ladies makes in my emotional health and ability to be a good parent and sane person. I can go to them to vent any frustration. They never undermine or dismiss an issue or problem, and they have a wide range of experiences with their own children to help guide me in the right directions. I can go there to celebrate any success, no matter how trivial it might seem to the parents of neuro-typical children and they always celebrate with me. It also gives me a place to be supportive and feel helpful, which is valuable in itself.
Autism is not just an issue for the child that has it or the family of that child. It affects everyone in the community, and with the new statistics that are out, every community will be touched by it. Be aware of people who are different but valuable, in their own world but a part of yours as well, and who may not speak but can be hurt by your words and exclusions. Embrace them, and teach your children to embrace them. It will mean more to them than you can imagine.