"What I would like others to know about Autism: Lessons turned to Blessings"
When my son was about 2 and a half, I noticed that his speech wasn't where it was supposed to be. And so many friends and family--wanting to ease my fears and encourage me not to compare him to other children--reminded me that all children develop at different ages, and that he was just on his own path, which was true, but every mom is keyed in to her child better than anyone, and notices when things just don't feel right. Although my son has always had a huge vocabulary from an early age (And was able to identify all letters of the alphabet and all of their sounds at the age of 20 months) he was not able to initiate or even imitate the beginnings of conversation. He also exhibited wildy frustarated tantrums at seemingly unimportant play-tasks common for toddlers. Once he turned three it became clear to me that he needed to have an assesment in order to determine what course of early intervention we would need to take. I knew this was a great decision, and he entered a PPCD class at the age of 3 and a half, and has been recieving great intervention since then. Just last year, at the age of 5, as suspected he was diagnosed via the special-ed staff as autistic. While I am no expert by any means, these past six years have definitely taught me a few things about Autism, and I would like to share those with you today.
Sleep, or lack thereof: Children on the autism spectrum often have major sleep problems. Despite all of your sleep-training, schedules, strict sleep-schedules, and even (more) strict schedules, we as autism mommies and daddies often find ourselves at our witts-end, exhausted, and coming up short. Our nights consist of waking up to our kiddos screaming bloody murder, or not even waking up because it is 1:30 am and we STILL cannot get them to sleep. Most people will never understand this type of true exhaustion, and some will be judgemental, so be prepared for suggestions that just flat out aren't going to work. My suggestion is to take it all with a grain of salt, say a prayer, and know that somewhere not far away there is another mom or dad going through the exact same thing, and that many children will grow out of it. My son is six, and finally starting to rest well at night.
Guilt: Having a child on the spectrum as well as a neurotypical child can be complicated. We are so blessed to have our precious boys, but with every milestone our youngest hits, I secretly lament for my oldest son. You want to celebrate new words, phrases, and conversations, but how can you be happy for and praise one child while the other struggles with basic communication? It not an easy line to walk. But God--being the amazing creator that he is--has shown us blessings through these situations. Being around a very talkative little brother is helping big brother some now.
Loneliness: More so before my son's diagnosis, I remember feeling completely disconnected from all the other mothers around me. I often wondered what God expected from me when I was grappling with my son's frustrated screaming fits because he couldn't express himself. I felt as though he had been dealt a raw deal with me as his mother. I wondered if I would ever wake up one day and be the awesome mom all of friends were--and most important, the kind of mom my mother was--and is. Observing other moms happily interact with their non-asd children was like a television show. Something pleasant to watch, but not real to me. It wasn't even anger that I felt, or jealousy. Just sort of a fact that happy and peaceful interactions and normal communication was just something I was never going to have. I used to have dreams where my son and I would sit talk about his day. I'd wake crying. Happy, but with such a sense of longing.
Worry: Being a parent, this comes with the territory, but compound that with your child's minimal communication, and the tendency to wander off makes an autism parent's worry-radar crank up to dizzying levels. The news stories are scary. We have all heard them. It is enough to keep us up all night for that reason as well! So many fears are multiplied. Going to school, visiting new places, being in another person's care are major things for us. These just come with the territory for us until our littles learn to communicate, and for those that are severely autistic it is even more difficult as they need round the clock care. Our best advocate short of lots of prayer, is for our friends and family, to just understand that we are going to have to be a little more overprotective I'm certain situations, and to respect that.
Judgment: I don't know what it is about having a child on the spectrum, but people love to hop out of the woodwork to criticize. I see it often, and have even experienced some of it firsthand. People give dirty looks or make snide comments about a child having a communication meltdown, or maybe he or she is unaware of their personal space, and gets too close. Letting your child stay up late because their sleep rythms are not even on the charts as "normal", or giving them the one (and only) meal they will eat often garners uneducated comments about how to best handle an autistic child. Even having a horrifying experience with a vaccine will bring out the ugliest side of those that you may have thought were your friends--as though they were alongside you the week that your four-year-old lost several word phrases from his vocabulary, had twice the communication meltdowns, dropped off eye contact completely and became un-pottytrained all within days of having his shots. You think they won't, but they will. And that is surprisingly OKAY. Why??? Because you know your child better than anyone else, and no comment or article will ever take away what you witnessed. There is a small percentage of children that experience this as well, and there can actually be safer ways to vaccinate. All is not lost, and know that not everyone is informed, so you must not take to heart the hurtful things people say.
Messes: There are lots of them. Some entertaining, some not so entertaining. Potty training can sometimes take far longer, and accidents and mishaps can last for years. it is important to understand that it comes with the territory and does not mean that child is not trying.
Blessings: Not everyone would look at autism this way. And the thought of it might anger some, and that I respect that. But as for my walk, I see it differently than I used to. A few months ago I signed up for an amazing mom's Bible study. I didn't attend many sessions because it was at a time that my life was becoming very busy, but I remember we were studying from a book about parenting from the aspect of how Jesus served others during his time on earth. We as mothers are servants too. Not in the sense of doing absolutely everything for our children, but in the respect of Matthew 25:45. "Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me." Just as our children require so much from us, does God not grant us all that we need? In the every day, the exciting, the mundane, the diapers, the fits, and the endless requests and needs, we are serving God. We are answering the needs of those in our care, just as Jesus served on earth so long ago. It really put things into perspective for me, and my role as a parent to a child on the spectrum. For every struggle I have, it is an opportunity to serve God on an even deeper and more personal level than I ever imagined. Not only am I meeting my son's needs, but is bringing me closer to God, and I return, I can bring both of my sons closer to him as well. I'm not saying that means less struggles, and I am definetly human in that some days my patience runs thin, but I will say I am greatful to have finally found some peace in my journey as a mother to a beautifully special child whom I love to the moon and back, and that holds a BIG piece of my heart.
As an autism mom or dad, what would you add to this list? Not an autism parent? What questions do you have about autism?
