From an autism mom for Autism Acceptance Month, April 2023

Being a mom of an 11.5 year old young man who is currently a non-speaker and who holds a Level 3 (“severe”) autism diagnosis I have learnt a lot and am still learning on a daily basis how to best support my son, my family and other families like ours. So for autism acceptance month I share this...

For the parents and caregivers who have recently received an autism diagnosis for their loved one or for those who are veterans in our autism world:

* It’s okay to cry - I cried for a whole day when I received my son’s autism diagnosis (he was 2)... I felt like my heart had been ripped out. It did not mean that I didn't love my son.. I had no idea what autism was and the more I read about “severe autism” the more I cried. I still cry from time to time - it's a lot!

* It’s okay not to know everything about autism all at once… it will come and your child will grow and work with you and you will both learn together.

And as you grow... forgive yourself..

* I forgive myself for all those times I laughed and used the word “retarded” when I was younger and joking about a silly thing your friend did.. I was not educated to know any better. I would never use that word or anything like that word ever again but I know now…

* I forgive myself for all those times I was embarrassed because my son made a “funny” noise when he was stimming and he disturbed those around him - he still does this but now I educate those around him and help him if he is unregulated the best I can and help others who may be suffering from sensory overload or just having a hard time. Do I still get embarrased? Yes I do.. I am not proud of that but I am learning.. I’m a work in progress.

* I forgive myself for all those times I needed a break and wanted to be by myself because it was all too much - whether there was self injurious behaviors or when my son was having a meltdown or one of the other "fun" things that accompany severe autism. Once the moment had passed and my son was back in a good place, I needed a break - you need that time - you need a walk, a run, a weekend to yourself, time with your loved ones and with your friends and time to have a cry - I’ve done all those things and continue to do those things. You can't be with any child whether neurodivergent or neurotypical 24/7 - you need your "me" time... god knows we all need a break to be the best versions of ourselves.

* And the big one… I forgive myself for not presuming competence... all those years I was talking about my son's needs like he was not there and made plans for what we would be doing as a family and not knowing he had his own ideas and interests and needs. I forgive myself because even though my son is non-verbal that doesn't mean he isn’t smart and understands EVERYTHING and has an opinion. Even now my son cannot always get his needs met because he is not consistent with his pointing to his letter board or typing but he feels much more relaxed that we try to help and give him plenty of practice to attempt to get his needs met.. we do not underestimate him any longer!

Do I still struggle each day to be the parent my child needs? Of course I do!

Do I feel guilt my neurotypical child does not get the attention she should from me? Absolutely! I talk openly to my daughter about her brother’s needs and I make a point to acknowledge our family is very different so her life is "different". Over the years, I haven't always been able to sit down at the table with her for dinner because her brother was having a meltdown or needed my 24/7 care. I try to make up for all these things she has missed when I can and I talk to her about our life and how much I appreciate the sister and daughter and wonderful human she has become. The pressure of a special needs siblings is huge - they push themselves academically and in their crafts because they know the amount of struggles their sibling has and how it takes a toll on their parents. How do I know this... I talk to adults who have siblings with autism who for that matter are all super fantastic humans themselves.

And let's talk about those dreaded IEP meetings...

Even as a special education advocate, I still hate IEP meetings like everyone else. Whilst I am well versed in special ed law and know what my child needs as a parent, it is still hard for me to attend my own child’s IEP meeting as a mom and hear about his deficits. There's always the fight for the education he deserves and the constant battle to educate the team of professionals at that meeting on how capable my son actually is even though he cannot speak yet.

So to kick off autism acceptance month, here is a reminder to our fellow autism community - you’ve got this, you can cry, you may feel like a failure (I certainly do this). BUT you are far from it - you are stronger than you realize, your children (whether neurotypical or neurodivergent) are lucky to have you. Our children with additional and different needs have made us top humans - we are empathetic to people’s needs, we are non-judgmental, we are forgiving, we are wonderful friends and partners.

Autism is not a tragedy... it has made us who we are today! The only tragedy is that, more often than not, our autism community is still not included and it is ALWAYS a fight to get our children services and to provide them with sports and activities and overall fun experiences that their neurotypical peers receive. Our children are like everyone else - let’s treat them like that.

To all our single parents/caregivers of children who have different needs - my hat goes off to you… you are pretty terrific and are capable of anything!!

And to everyone.... let’s teach our babies to love all babies irrespective of whether they have a disability. Invite your classmate with different needs to your birthday party, invite your neighbor and their family to come on over just to hang out and if you have questions... ask! Generally, members of our autism community are happy to answer any questions you might have. Research shows that neurotypical individuals who include individuals with different needs makes them better humans in every way possible.

Whether you can afford it or whether you cannot, you will always worry that you have not done enough for your child whether it be academics, school/community placements, fun activities or just basically giving of your time... you have done enough and you are enough!

On behalf of your loved ones who hold an autism diagnosis (some cannot always tell you) THANK YOU for all you do and for all you are... you are loved and appreciated and you are more than you know...

From my heart to yours...

Tracie