Top 10 things for parents whose children received the autism diagnosis

Will, Beba (grandma), Stevie on Christmas Day, 2017

Will, Beba (grandma), Stevie on Christmas Day, 2017

Will is our first-born boy and when we had him, we did not know what a typically developing child really looked like.  We just thought that because I spoke Spanish and Martin spoke English to him, his language development would take a little longer.  It took someone from the outside brave enough to suggest to us to take him to the local ISD (Independent School District) to see about a speech delay.  Some local ISDs will test your children for free if they are under the age of 3 and if they qualify for help, they can participate in early development programs at the local school for children that are 3-5 years old.  At the fourth time of bringing Will to the school for additional tests, a school psychologist, a diagnostician and two speech therapists all broke the news to me that Will had autism and that he qualified for help. They all paused as if I was going to break down and cry, but all I could say was, “Well, he doesn’t have a terminal disease.  What’s the next step?”  This seemed to catch them off guard, but they were happy with my reaction.  I didn’t understand the extent of what this would mean for us. He attended the school for a semester, but it was obvious that Will would need more than what they could offer him.  

Here is a list of what I wish someone would have told us when we started our journey. I hope this brings you hope and a knowing that everything is going to be fine; different but fine, even amazing.

Here are the top ten things you need to know as a parent whose child just received the Autism diagnosis:

1.    Grieve. Let the guilt and shame go, and don’t ask why this happened.

During my grieving process, my husband said something to me that I always share with parents who have just found out their child has autism ,“Imagine if he had been born in another family that didn’t care, didn’t have the resources, or the drive to do the absolute best to help him.  How much harder would life be for him?”

One of the hardest things to hear is that your child will not be what you expected or hoped he would be.  All of the sudden you’re wondering whether he’ll go to high school, college, have a job, get married, have children, etc.  And you cry for a future that you think will not be possible because you’re looking at your kiddo through the lens of disability.  I’m here to tell you that by exploding the paradigm of “normal”, you can now create your lives in an exceptional way.  Since nothing has been written on how life “should” be lead, there aren’t any paradigms to hold you back. There is a huge sense of freedom to create life how you want to create it.  Relish that.  We should all be living this way.

2.    Get the autism diagnosis from a medical professional.

More intense and effective therapies specifically for autism will require a doctor’s diagnosis (a developmental pediatrician, psychologist or psychiatrist can help with this) so that they can be covered by medical insurance under mental and behavioral services.  Unfortunately, all these therapies are expensive (understandably so because they take so much work per patient/client) and we have definitely gotten ourselves into debt to pay for all the therapies.  Would we get into debt again to help our boys out during the most important years of their lives?  Absolutely! Early intervention is key!

3.    Find ABA, Speech and OT therapists near you

We were blessed (or lucky, if you prefer) that our boys were born in the time and space they were born.  There are so many resources for our kiddos now.  We are in the DFW metroplex and we started out with Easter Seals North Texas in Grapevine with group therapy, where your child has one-on-one ABA therapy some of the time, but most of the time they are surrounded by typically developing children so they can learn to be like their peers.  We really enjoyed our time there and learned as much as possible about ABA therapy so we could use it at home.

Because of insurance issues, I was devastated and afraid that we had to move the boys to another place of therapy because they were doing so well. But it turned out to be the next best stepping-stone for the boys.  Pediaplex, a one-stop shop of ABA, Speech, OT therapies and child psychology, was priceless for us.   They improved even more! 

My lesson learned there was to be flexible and have faith that everything will be fine.

4.    Find out what’s covered by your insurance

Fortunately for us with Pediaplex, I had pretty good insurance through my employer and they took our insurance, however dealing with insurance companies can be very frustrating.  Some places of therapy will actually have someone to help you talk with your insurance company to find out exactly what’s covered. Although you think you have good coverage, with behavioral and mental services things are a little different. Sometimes they do not cover everything or they cover only a specific amount of hours/days/sessions, and the rest you have to pay out of pocket.  This is why you’ll see that there are some specific independent medical insurances that can cover almost all (or all) of the costs of ABA, Speech and OT, but they can still be expensive and you’ll still need to pay for things out of pocket at times.  

On the bright side, you’ll hit your out of pocket max and then everything is covered for the rest of the year (but don’t quote me on that, you NEED to make sure you understand your plan and if that’s the case for you)!

5.    Take time for yourselves as parents, together and separate, no excuses.

When you deal with a tantrum thrown by an autistic kid and you don’t know what’s happening, the amount of stress and anxiety your body builds is beyond words, especially as a mother.  Through a series of events, I found out that me breathing and taking control of my emotions worked a lot better than freaking out and yelling at the kid or putting him in time out.  At that time I found what yoga could actually do for my state of mind, not just my body, and my life changed. I became a certified yoga instructor. I learned meditation, breathing techniques, and self-awareness that put me on the path to becoming the best self I could become.  My yoga was my time for myself.  I was better when I did yoga.  Martin, my husband, knew this so he would kick me out to go do yoga.  I learned to do the same for him.

6.    Get a good psychologist for you and your spouse, and get a good child psychologist for your kiddo.

I must admit that I never got a psychologist for myself nor my husband, but definitely got a great one for Will.  What we have done instead is surround ourselves with very supportive people. We also have the blessing of having a wonderful relationship as partners in a marriage.  We are honest with each other and support each other completely. It’s not perfect and of course emotions come and go, but we truly care about each other and our children so we make sure to communicate all the time.

7.    Find out what the local ISD is like for special needs and work with the teachers.

It takes a village.   I cannot say this enough.  Your children’s teachers and therapists are included in this group. Make sure you know who they are, that you let them know that you are willing to work with them, and DO work with them.  It’s not about dumping your child on their lap and having them fix the problem for you, it’s about a working relationship.  Be open and be optimistic.  Always ask what went well that day versus what went wrong.  Be honest on what you expect them to do to help you with your child, but you also need to learn how to best help your child. So, talk to your teachers to see what they are doing in the classroom and try to bring that home.  And let your teachers know if there is something that worked at home so they can try it in the classroom.  Also, there are At-home specialists in some school districts that can come to your house once or twice a week to help you work with your child on specific issues at home.  Make sure to call the Special Needs department to get more information on what services are available to you.

8.    Build your support system at home and explain to them what is autism. 

Make sure you explain how to care for your child if they don’t know. Disciplining an autistic child can look a little differently.  And yes, all children should have and know their boundaries. It’s communicating with them that can be a little challenging.  This is where ABA therapy really has shined for us because it’s all about positive reinforcement and we all (including normally developing children and adults) respond really well to that; you just have to be observant and creative in your approach teaching and executing it.

9.     Give each other space and time to be who each one of you are.

This takes time to develop because of our own preconceived notions of what life should be like, what each person’s role in the family should be and their behavior. The more you open your mind and you allow people to be themselves, the more comfortable and happy everyone will be. Let it go (think “Frozen”)!  It’s much better to be at peace, than to be right.

10.    Learn how to deal with your emotions.  All of you.  Learn to allow yourself to HAVE your emotions, but then see why you’re having them, see how you can let them go and breathe.  No need to lash out to people, because they will then have to deal with their emotions AND yours.  My husband taught me this lesson about me.  It’s just not nice and not productive.

This is by no means an exhaustive list, but it's a start.  Try to keep yourself from getting overwhelmed and take it one step at a time.

Please stay tuned for more blogs and stories on our boys, our wins and our lessons.  Hopefully they will help you in some way.  And if you have any questions, send me an email.  I would love to continue to be of service.  Love, light and blessings!!