I’ve read a few posts with similar titles that have either made me angry or were gratuitous pitches, so as someone who’s been an autism mom for over 3 years now, I thought I’d answer your question. Here is a list of things you need to know when raising a child with an autism diagnosis:
How To Handle Your Child’s Autism Diagnosis
1. Acknowledge your pain.
Honestly, it’s ok to cry. Hell, I used to cry over Buffy and Angel when I was well into my 30s. And it’s ok to yell at God, He can handle it!
The thing with autism is that it manifests in so many different ways, that it’s hard to study and it’s hard to treat. Each child really needs to be looked at individually and that means an awful lot of work and stress for you, but now you know – and that’s a good thing. You can move forward and make the changes you need, but take time to grieve the hard stuff. Your child is still the wonderful son or daughter you love. A diagnosis simply empowers you to get a better grip on what your child is going through and helps you to understand him better.
This is tough stuff! Allow yourself to work through your feelings, no matter how often they crop up. I personally that when new crises arise because of my kids’ disabilities I sometimes have to let it out. I get frustrated with myself at times, because I think, “Shouldn’t I accept this already?” Every parenting journey can have twists and trials you did not expect. Don’t box yourself into “always have to strong mom” arena. Take the time to process your emotions and you will feel better.
2. You need support.
By support, I specifically mean that you need to connect with other moms or parents who have kids with an autism diagnosis. make friends with other people raising kids with autism. Parents of children who no experience with autism don’t always understand what is involved in raising your child and the numerous challenges they have like sensory issues, self-injury and regressions. There is nothing like that good friend who has been there, done that, and can throw an arm around your shoulder – even if it’s a virtual one. And, knowing other autism parents help you maintain you sanity.
Personally, both Facebook and the holistic community, our former charter school and some of the Christian community have been for me traditionally the best places to find like-minded parents. Another source of similar parents are neighbors. There are probably about 6-8 children on the spectrum on our block. I also made friends at conferences, like the annual National Autism Conference or AutismOne. Finally, if you can’t find anyone, go to TACANOW to find a local chapter OR learned more about their mentor program, to find someone to help you!
3. Change happens, and it’s not always good.
Autism is a roller coaster ride. Today your kid bangs his head, tomorrow you overcome that, but now he won’t wear shirts. Ever. Now you master the clothing issue, and suddenly your potty trained child will not sit on the toilet. It’s a constant give and take, one step forward, 2 or 3 back. Then they grow and their bodies change, and you can find a whole new set of challenges during puberty.
When you’re raising an autistic child, there will be times that you yourself scratching your head, wondering, “What now?” Try to embrace those changes. Over time, you’ll also learn that you can improve things for your child but you can’t heal everything. Find the good in where you are today. Sleepless nights can be resolved. Head banging can be healed. And you will figure out how to get your child to wear clothes outside in the winter, I promise, at least for long enough not to freeze to death.
4. You child’s autism diagnosis will make you stronger than you ever imagined.
Forget those pitbull mamas and spare me the hockey moms. I’ve seen a lot of parents, met a lot of parents of disabled and special needs kids, but there ain’t nothin’ like an autism mama. We fight, we campaign, we try stuff that other people call crazy, we even forego our own health, all in the service of reaching our beautiful, purpose-built children. Don’t fear autism, instead, learn its ways, and then learn ways around it.
Solve, change, and cure negative behaviors when you can, and dig out your child’s strengths to make them shine in ways that the world will tell you is not possible.And always, always empower your child. An autism diagnosis is not the sum total of your child, but just a part of their unique and incredible personality.
5. Avoid the critics.
Because autism is so complex, so heavily debated, and manifests in so many ways, I do believe that the best approach to improving your child’s life is “leave no stone unturned.” That said, plunking down thousands of dollars for something that worked in one child’s life may not be the best route for you or your family – or it may be the one thing that changes everything. Personally, we’ve found the most possibilities in both homeopathy and biomedical treatment, controversial as they may be. Right now, we are considering both hyperbaric oxygen treatment (HBOT) and Protandim.
It’s key to learn everything you can before you try anything and its also critical to be at peace with your choices. For our family, I refused to put my children on medication because I don’t know of any studies of long term effects of most of these drugs on a growing brain. I’ve also seen the havoc such drugs can reek, although I’ve seen the benefits too. On the other side of the equation, I’ve avoided chelating, a procedure that removes mercury from the bloodstream because of its risks, despite seeing benefits to many children. Do all your homework because treatments can have lifelong affects – good or bad – on your child.
Do your research, make your choices and don’t apologize to anyone for doing the best that you can do with what you know.
6. Hope is not a dirty word.
If you ever hear a doctor, psychologist or other professional say the words, “Your child will never –,” get up and leave. DON’T ACCEPT DEFEAT. Ever, or at least not at the outset! Have a dream for your child based around the person you know he is, pursue it, and don’t let anyone talk you out of it – not any school principle, nor doctor, nor health professional. Your child is unique and here for a reason, it’s your job to discover it and help him find his way.A hopeful outlook is choice that you can make and pass on to your family, and it will benefit your children.
Welcome to the new and growing world of being an autism parent. It’s not easy, but you will bond with new friends on a level you never thought possible, learn amazing things about yourself and your child, and open up to a whole new way of seeing the world. I’m here to tell you, it can be beautiful and it will change your life for the better.