At least every other week, I get a call, text, or email from someone looking for autism advice. Their child has just been diagnosed or they see the red flags and are looking for confirmation. Sometimes I know them but sometimes they’ve just been told my name from a friend of a friend. Also, I have told local case managers in the area to feel free to give out my contact info to families who are just starting out with the diagnosis.
Each message from a Mom pouring her heart out, venting, sharing her worries breaks my heart a little. I remember the day, down to every detail, when Brian was first diagnosed with PDD-NOS. I also remember the day a year later when he was given a full-blown autism diagnosis.
It’s a hard and sometimes, very lonely, road. And I don’t want anyone to feel alone while they navigate their new road map. So without further ado, here are my top ten bits of advice.
1. It’s okay to feel sad. I tell them that receiving a diagnosis of autism is receiving a lifetime of cycles of emotions. Don’t feel you need to apologize for those emotions. I know you love your child to the moon and back again, these cycles of emotions doesn’t have anything to do with the love you feel for your child.
2. Find support- be it online (be careful, online support groups can be very divided, believe it or not) or in real life. Find someone who has been there, done that. Both the Children Museum in Portland and the one in Bangor have special days for families with children on the spectrum. It’s a great place to meet other parents!
3. Attempt a diet change. I can’t tell you how much this helped Brian. Check out the books Unraveling the Mystery of Autism & Pervasive Developmental Disorder (I’m partial to this one as it was the very first book I read after Brian’s diagnosis) and Special Diets for Special Kids. Give it a solid six weeks (no cheating) and see if you notice any change. If you are game also check into a DAN! (Defeat Autism Now) doctor or a naturopath for other alternative treatments to help with methylation and healing the leaky gut.
4. If you have received a diagnosis no doubt you are involved with CDS or your school system. You’ll be overwhelmed with IEPs and acronyms like LRE, FAPE, and IDEA. Consider the Wrightslaw Special Education website your new best friend. You are not going to learn it all over night so make sure you have a great case manager on your team that you can trust to fight for everything that your child deserves.
5. Get all your therapies lined up. I recommend occupational therapy for sensory processing issues as well as fine motor, gross motor, and daily living skills, speech therapy for speech- even if your child is talking he will most likely need speech to help with pragmatics and social communication, and applied behavioral analysis (ABA) to work on behaviors and academic skills. However, do your research- different therapies work for different families. Floortime is also awesome and I’ve always been very intrigued with SonRise.
6. Speaking of sensory processing issues! Though a child can have sensory processing disorder without autism I have yet to meet a child with autism that doesn’t have sensory processing difficulties. Make sure to pick up a copy of The Out of Sync Child and The Out Of Sync Child Has Fun. You’ll learn all about a sensory diet and how to help your child get the input he craves.
7. Get on a waiting list for a developmental pediatrician. You can still see your pediatrician for all the typical child stuff but a developmental pediatrician is really great at making connections your regular pediatrician might miss. Ours has helped us out with constipation, OCD, and getting more support at school and home.
8. Does your child wander? Or even have the teeniest tiniest risk of doing so? Go to NAA and order yourself a Big Red Safety Box for only $35. It’ll be the best $35 you’ll ever spend. And call your local police station and see if they have a database for individuals who wander (if they don’t- email me and I’ll help you get one set up!).
9. Learn about visual schedules and social stories. Really awesome tools for kids on the spectrum- even the Aspergers kids! Breaking it down visually can help with that executive functioning for the higher-functioning kids and can help with the receptive language block with the lower-functioning ones. So easy to make and can really save you from many a tantrum! I really like this link: Indiana Resource Center for Autism.
10. Take time for yourself. Keep doing date nights with your husband. Barricade yourself in your bathroom with chocolate, wine, and a hot bubble bath. Read trashy romance novels in between the autism books. Keep your sanity. A refreshed, relaxed Mom is the best type of Mom.