Piecing the Puzzle Back Together: Tips from a Mom of an Autistic Child
Hello, I am Brooke. I’m a seasoned mother of an autistic child and one ‘typical’ child as well as the author of several Autism Help Books and an administrator of an international Autism Support Group online. When I was 19 years old my life changed forever. I became a mother. I must say that there are NO words to express the feelings I felt during the nine months of pregnancy and specifically on the day of my son’s birth. While I was excessively excited to become a Mommy, I was also petrified. I read every single book there was out there to read aimed at preparing a woman for motherhood. Nothing prepared me for what was about to happen, no one mentioned what to do if my baby was disabled. I didn’t read any books about that.
1. The Beginning is the Hardest
At 8:06pm, November 19th, my new reason for living was born. We named him Zain Mikeal. He was 8 lbs. 1 oz. and 22 inches of perfect. That is, perfect all except the seizures he started having at 36 hours old. I knew in that moment that raising this child was not going to be like raising any ‘typical’ child. This was going to be a challenge. I thought I had prepared our home and ourselves for parenting, and as it turns out I had. I prepared the crap out of our home for every single thing that could be thought of happening while raising a ‘NORMAL’ child. However by 3 months old, when Zain started violently beating his head on the floor and then the walls as he aged, I realized then that raising Zain and raising a ‘normal’ child were two ENORMOUSLY different things. I instantly questioned my preparations.
The Road to a Diagnosis
By age 4 we had spent 4 years teaching ourselves how to handle things such as:
• deafening screams
• non-stop meltdowns
• his self-harm
• How to protect ourselves from him when he did explode.
• How to communicate with him seeing as though he didn’t speak yet
• Him never sleeping at all, EVER
• Him not being potty trained still
By this age we had also finally gotten an answer as to what was going on with him. It was this disorder called Severe Autism, not only that but the doctor had spit out about 7 other disorders that I was equivalently clueless about that apparently my child had too. These ‘other’ disorders are actually called co-morbids and they are extremely important components in learning how to teach and understand your child. In some cases they even explain meltdowns, stimming, and picky eating, etc. DO NOT EVER IGNORE YOUR AUTISTIC CHILD’S CO-MORBID CONDITIONS!
By this point I was beginning to feel like I was losing myself in Autism. I had barely begun learning about it and I was already forgetting everything else. I was not taking time for me, everything was about fixing my son.
2. Autism Diagnosis Doesn’t Give You All the Answers Instantly, This is a Life Long Fight
For starters, I had NO idea what autism was at first. I have found over the years, a great deal of parents have NO idea what autism is prior to their child’s diagnosis either. It isn’t uncommon to be clueless and resort to obsessively surfing the net all night long, learning everything you can about the disorder that seems to have stolen your child from you. It is extremely important to pace yourself when you are researching though. It is easy to become burnt-out. Not to mention there is so much misinformation out there that you have to really verify.
When surfing the net beware of things such as:
- Any group promising a magic cure for autism. There is NO cure for autism and anyone promising one more than likely has ulterior motives.
- Any group or person promising you a magic treatment for autism. Again, there is NO magic treatment that seemingly cures autism.
- Webpages and/or groups that claim to know all about autism but none of the people involved have an affiliation with autism.
- Any website that requires you to purchase a product in order to hear about their magic cure/treatment. There are plenty of places to go online to learn that DO NOT require you use your credit card.
I didn’t heed my own advice on this. I researched until I cried every day and I took what I read as truth. It was a huge mistake. You are NOT going to learn everything you need to know in one night, let alone a year or two. You will spend your life learning about autism so pace yourself.
3. Like-minded Parents are The Best Resources
Online it seems that everything is written for and focused on the more extreme severities. While this fit my son, it left me with a mislead belief that all these children are the same. It wasn’t until I connected with other parents that I became enlightened to the other severities. Parental information is some of the BEST you can get when it comes to autism. In a lot of cases the parents you meet actually know more about it than your child’s doctor does. Other autism parents are also amazing resources for personal support. If you are like me you NEVER thought you’d need support from a stranger, you can do this on your own. Boy was I wrong, some of my best friends I’ve never met face to face. I implore you to utilize other parents as a resource, regardless if it is online or in person. You will NEVER find more supporting people with more wisdom to share than you will find in an autism parent.
4. The Doctors are Not Always Right
It’s been a decade now since I welcomed that little boy into my life and I can’t imagine my life without him. He is a completely different child now. Because of intense therapies he speaks now. He expresses himself, he shows me love, and he can participate in regular classes in school with the help from a 1 on 1 paraprofessional. He is further now that we thought he would ever be in life. I am beyond proud of him.
They said he’d never:
• potty train
• learn his emotions
• live alone
• Have kids.
I refused to accept that. I’d say he refused to as well because he did all of but 3 by age 9. If I had listened to his doctors and gave up he WOULDN’T be where he is today. I knew they were wrong and I acted accordingly. You know your child. Fight for what you know they need, in the end it may be what makes all the difference.
5. Autism Does Teach Life Lessons
I use to hate autism. I despised it. Come to find out autism has taught me more about myself than anything else has. It has taught me what true love is and what true patience is. It taught me my limits and that there are few of them. It may have stolen the thoughts of the child I imagined I would have, but it gave me even better. It gave me the chance to learn how to see the world through different eyes, from an angle only an elite few get to see the world from. While this journey is HARD, TIRING, AGGRAVATING, and STRESSFUL it is also the most beautiful journey you will ever take and your tour guide is absolutely irreplaceable.
Always remember that no matter how you feel when your child is FIRST diagnosed with Autism, by the end of their childhood you will have learned more about life than most and you’ll end up in a spot you never imagined you would. You will look back on the past several years raising your child and realize that you are luckier than you ever imagined you could be. You get to live your life through autism’s eyes and while, to some, that may not seem like a blessing just yet, give it time and you’ll realize there is NO greater blessing in life than that.