What to do When You Have a Newly Diagnosed Child on The Autism Spectrum?

I’m in a few Facebook groups for parents of children that are on the Autism spectrum or are otherwise neurodivergent.

One of the things about being a parent of a neurodivergent child is that after you are informed of your kids’ diagnosis is there is nothing. It’s like, “Here is the diagnosis. Thanks for your co-pay… NEXT!!”

Typically, doctors and other clinicians don’t offer you resources, support, or give you any information. Sometimes you have to fight to get a copy of the diagnostic report.

In my Facebook groups, parents of newly diagnosed children come and ask, “What now?” or “How do I get my kid help and services?” After typing the same response literally hundreds of times in the past 5 years trying to help parents and guardians (because I had no help and had to google and claw and find help for my child and family), here are a few resources that have helped my family:

If you suspect your child may be neurodivergent, contact their pediatrician. Ask for an assessment. You may receive a referral to a psychologist. The intake process is lengthy. There are typically 2-3 appointments, plus lots of paperwork to complete. If you receive any pushback, keep pressing forward. If your doctor says no, call your insurance provider directly and ask for help. If you live in San Diego County, you can also contact the San Diego Regional Center directly for help getting an assessment.

Once you receive a diagnosis, request a copy of the paperwork for your files. You will need a copy of the diagnosis paperwork to access services.

Important side notes: Start a file/binder (I use this one) for all of your paperwork. There will be a lot of it. I also have heavy-duty page protectors and folders in the three-ring binder. I keep his IEP (Individual Education Plan), IHSS paperwork, Regional Center paperwork, a list of his doctors (including their phone numbers and addresses), and copies of the medication inserts/directions that come with the prescriptions.

If you are in San Diego County, contact the San Diego Regional Center. Any resident of San Diego or Imperial County believed to have a developmental disability may receive intake services through the San Diego Regional Center. The Regional Center can help you access services such as respite care, Medi-cal Waiver, and access to community services. For most families, Regional Center services are free or very inexpensive. The intake paperwork will go over income requirements for payment for being a Regional Center Client. Our kiddo has been a Regional Center client for 5 years, and they have been a great resource.

Once you get in touch with the Regional Center and your child becomes a client, you want to get your child on Medi-cal. This will allow them to receive the most services and can help your family access IHSS (In Home Support Services- Someone to help provide care for your child, as their special needs may mean that they require extra care or support above and beyond what a neurotypical child their age may require).

If your family makes too much money annually to qualify your child through Medi-Cal, ask for a Medi-cal Development Disability Waiver. Having this waiver for your child is really important, as it will open up so many services and programs.

Some neurodivergent children require services to help better their quality of life. Some of these services include:

  • OT (Occupational Therapy)
  • Speech Therapy
  • Behavioral or Mental Health Therapy
  • Feeding Therapies

The Regional Center Case Worker assigned to your child can help you navigate what services they can help with, and provide resources.

Note about Medi-cal: Just because your kid has it, doesn’t mean that you have to use it as their primary health insurance. For our family, we use Medi-cal to cover the gaps that we’ve found in our primary insurance. Covering co-pays for medication that relates to his diagnosis, and in the past, a few other therapies that we no longer utilize.

There are a lot of support groups online to help parents navigate life with Neurodivergent kiddos. It’s worth a Facebook or Reddit search, using your city, state, or geographic area.

There are also a lot of non-profits that are all about helping Neurodivergent people. I love NFAR (the National Federation for Autism Research), they are local to San Diego, and they have programs for parents, kids, and teens, and adults.

The Autism Tree Project Foundation is another NPO I love. They have all sorts of great playgroups, events, and resources for families of Neurodivergent people.

MOST IMPORTANT: Regardless of your child’s diagnosis, they are still your kid. Nothing changes your love for them and their love for you. If you are uncomfortable or if your child is uncomfortable with any therapies that they take part in, listen to your gut, and listen to your kid. There are some therapies that are commonly accepted that older Autists (people on the autism spectrum) recount as having negative mental or physical impacts on them.

Please seek out support- There are a lot of people who have gone through what you are going through. Lots of parents, friends, allies who can share their resources, and offer you a shoulder to cry on when you are frustrated, and hugs when you need them. I count myself among those supporters. When you need help or support, don’t hesitate to email me or DM/PM me on any of my socials. 

Free Parenting Classes (Online)

I got information about this class in my inbox from our local school district. This class is free and is all online.

Systematic Training for Effective Parenting (STEP) Classes.

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I’ve never taken this class, but it looks like a great opportunity. After Finishing this 7-session course, you will:

  • Receive a Completion Certificate
  • Fulfill court and other requirements under the Welfare and Institution Code
  • Have a Better understanding of your child’s behavior and make steps toward building a happy home.

To sign up or if you have questions, contact Luz Alarcon at 619-203-2108. Pre-registration for this class is required.

Did you hear the news…? Mom Conference is BACK!

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Next week one of the most important events for moms launches… one that you DEFINITELY don’t want to miss!

The best part of all is that you can register here for FREE:

Claim Your Free Seat Here 

203581.984e84acfa5f9e11c570a31cb3638f4c.jpgMoms struggle with so many challenges from raising non-entitled kids to battling overwhelm and balancing family at the same time… this event was designed to be a beacon of light for moms at all stages of motherhood.

Be sure to register now and set your reminder so that you don’t miss any of these amazing resources.

Here’s where you check out the line-up and topics discussed by these 32 amazing speakers.

View The Agenda Here

If you know you’re going to miss something over the 3 FREE days or you just can’t wait any longer and want access right now, today…You can still get the Early bird price for the VIP Access Pass right now, even if it’s 2 a.m.

You’ll see the offer for the VIP Pass just after you register for the event.

Parents: Give Yourself A Break

DSC06725.JPGA friend posted this article from Motherly this morning about how self-care isn’t enough and parents (especially moms) are burnt out.

I can completely understand. As the mom of a kid with ASD and ADHD, and well as a neurotypical firecracker of a 4-year-old, I feel like I am always going going going. And really, I feel like it’s not enough.

This summer I’ve said NO a lot. No to racing off to an activity each morning, no to lunches out, no to 5 playdates a week, the craft dates, all-day zoo adventures, and sojourns to the beach. Oh, and this would have been just 1 week of summer activities in the past. Imagine that for 8 weeks. Are you tired now?

This is something I want everyone who reads this to take the heart: NO IS A COMPLETE SENTENCE. 

Plus, I still need to do household chores, cook, laundry and make sure the big kid gets to therapy twice a week, I need to exercise at least 4 times a week.

In saying no to all of these activities, the kids are able to relax, which means they are in a better mood, which mommy is in a better mood. We are still doing stuff, but it’s more things that the kids can do at home or in a small group of friends.  We’ve been swimming at our community pool each day in the late afternoon, playing at the local park. We’re going to the YMCA a few times a week in the afternoon so the kids can play while I exercise. Stuff that is low stress.

Why is parenting harder? Why are we burned out? This article gives us some ideas. The increase in activities for kids (If you want to go to an Ivy League school Little Timmy, you need to start your extra-curricular activities at birth!), social media expectations (It’s like Keeping up with the Joneses on crack), the constant barrage of information and data being thrown at us (pics of our kids, nanny/daycare cams being sent to us, text messages, chat apps, always being connected to people and media). It’s overwhelming. It’s tiring. Being expected to be Instagram-ready or Insta -Perfect is frustrating and exhausting.

For special needs parents, it’s harder because, for the most part, our kids aren’t  “like everyone else”, so frequently we are ostracized from activities. It’s the truth, and it sucks. and it hurts. To shield my kids from this hurt and keep myself sane, we’ve stepped back from activities this summer.

I’m not going to give you a list of self-care activities that will help you de-stress. You already know what works for you, your family, your budget.  This is what I do.

What I want you to know, moms and dads that read this post:

You are not alone. There are other parents and caregivers out there that are feeling the same way you do. You don’t have to keep up with everything you see online. You are doing the best you can for your family. YOU ARE ENOUGH!

I found this shirt on Amazon and I had to share it. 

Planning for Pregnancy with Sharp Hospitals

My sister-in-law is about to have her first baby. Some months ago, we loaned her husband, my brother-in-law a copy of The Expectant Father.  While he was reading the book, he discovered that we had left a set of our oldest’s ultrasounds in the pages of the book.

She texted me a few days ago to let me know that they were mailing them back.  I received the ultrasounds today, and it really took me back to when I was pregnant with my oldest. I had no idea what I was in for. He was unexpected, and so neither myself nor my spouse knew what to expect beyond what modern media tells us (and what I’d experienced babysitting family and neighbors growing up). Reading the books we had purchased blindly at the bookstore (so many books on being pregnant and birth are available!) were helpful, but learning about what we needed to know first hand from professionals would have been so much better. I wish I had known about Planning for Pregnancy Events from Sharp.

CORP00264-Planning-for-Pregnancy-B-1080x1080.jpgComing up July 23-26 at 5 different Sharp locations throughout San Diego County is a free Planning for Pregnancy event where you’ll meet doctors including a Sharp-affiliated reproductive endocrinologist, OBGYN and other experts.

 

In addition to getting your questions answered about pregnancy and preparing for pregnancy, you will learn more about:

  • Preparing your body for pregnancy, including diet, birth control and what to avoid
  • Having a baby later in life
  • Choosing an OBGYN and pediatrician
  • Reproductive planning
  • Determining your natural fertility schedule and optimizing your ability to get pregnant
  • Fertility challenges and treatments, including how common conditions — such as endometriosis and fibroids can impact pregnancy
  • Support groups and classes at Sharp HealthCare. We used a lot of these support groups after our oldest was born. I had a lot of challenges with breastfeeding and PPD.

What I really like about these classes besides that they are free and open to ANYONE, regardless of which insurance company you have, is that doctors and specialists are there to help you on your journey to parenthood. Wherever you are in your journey, even if you’ve just gotten married or are thinking about kids someday in the future, this class at Sharp can help you.

I’ve taken a lot of classes at Sharp- all of which were free, and easy to sign up for. If this Planning for Pregnancy Event sounds like something you are interested in, you can learn more, and RSVP here.

This post was sponsored by Sharp, however all opinions are my own. You can read my disclosure policy here.

Baby Deals and Freebies

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I know so many people who are either expecting or adopting in the next few months. I thought I’d share some really great deals and freebies, since we all know kids are super expensive!

Free Walmart Baby Box! Includes samples and coupons

Regardless of any personal beliefs, a fed baby is best. I always recommend having a stash of formula samples and different types of bottles on hand. Thankfully, there area few formula companies that send samples and coupons! Similac and Enfamil are the two that send goodies most often.

If you are an Amazon Prime member, check out this free baby box of goodies!

And don’t forget that there are always great printable coupons for much-needed baby supplies! Save $1.00 on any (1) JOHNSON’S® (Excluding 1oz to 4oz, trial sizes and gift sets) or any (1) DESITIN® product (Excluding 1oz size)

Looking for more tips on how parents can save money? Check out this post.