5 Things You Don’t Know About An Autism Parent

This is a post in the new weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

Hi!  My name is Lisa and I’m a secretary by day, grad student/blog writer by night and a warrior mom round the clock.

When my son, Norrin was diagnosed with autism in 2008, he was 2 years and 3 months old. He had the cognitive level of a 14 month old and the language level of a 7 month old. Norrin didn’t point, wave or clap. He had no language. Norrin couldn’t jump or imitate behavior. I remember asking the developmental pediatrician if Norrin would be able to speak; the doctor recommended the necessary Early Intervention services but offered very little hope.

As a parent, I needed the hope just as badly as Norrin needed the services.

It’s been four years since Norrin’s diagnosis and he has come a long way. He is a six-year old boy who jumps on his bed and talks up a storm. Norrin continues to surpass expectations and he has given me the hope that I needed.

Prior to the diagnosis, I knew very little about children with autism. And I knew even less about the parents who raised them. There wasn’t a single parent I could turn to for advice or support. But in these last four years, I’ve met so many inspiring moms and dads with kids on the spectrum. And I’ve learned just as much from them as I have from Norrin.

So if you’ve never had the pleasure of meeting an autism parent, here are 5 things you should know:

We appreciate the “little” things. It takes countless hours of therapy to teach our kids to point a finger, jump and communicate. We wait. We watch.  We hope. And when we see our kids achieve something for the first time, we celebrate, we cry, we make a big deal over the seemingly smallest feat.  Because we know the time and work it took to meet that goal. They are usually the milestones most parents take for granted but for us – every “little” thing is a big deal.

We are like any other parent (with a twist). We’re not really heroes and we’re not especially amazing. We’re just parents doing the best we can for our kids. We want what any other parent wants – we want our kids to be happy and confident. We hope that as they get older, people will appreciate them just as they are. We hope people will want to understand them. All we want for our kids is to have the same opportunities as any one else.

We are a community. We don’t always agree. There are multiple opinions on cause, cure and therapies that work. And as parents we are passionate in our beliefs. But we stand united when it matters most. We cry on shoulders of strangers. We comfort each other with hugs and kind words. No matter what we believe, no matter how much we disagree, we understand each other in a way that others do not.

We are experts. Very few of us are special education attorneys, teachers or therapists. And before autism impacted our lives, chances are we knew very little about it. Every parent is the expert when it comes to their kids, but an autism parent has to also become an expert in special education law, in teaching methodologies, in medications, in researching services and in advocating for our kids to ensure they have the services and school placement that will meet their unique needs.

We are the change we want to see in the world. It is only in the last decade or so that autism has gotten the attention, services and supports that it needs.  The thing I admire most about the autism community is that where it sees a need – it fills the void. Often, it is parents of children with autism that open specialized schools and support, social and play groups. We work to make this world a better and safer place for our kids.  We work to help them be understood and be seen. We believe that our kids have a purpose and deserve a place in this world.  And when we see the world doesn’t know how to create that place – our life’s mission is to make one.

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  1. by Flannery

    On August 1, 2012 at 8:50 am

    AND we are bonded by our incredible experiences!

    Awesome post, lady, congrats to you!!

  2. by NiksmomNiksmother

    On August 1, 2012 at 8:58 am

    This is great! I’m going to share this with many. :)

  3. by Beth

    On August 1, 2012 at 9:07 am

    Lisa, congrats and thank you for this wonderful post. Wow, you say so much in so few words. I swear, I was just thinking this morning what instruments of change we all become. I hope many, many people outside our community read this. Awareness is good, acceptance and empathy–and maybe even some understanding–are even better. And thank *you*, Ellen, for adding Lisa’s voice to your mix. You were already doing so much for this community. You are awesomeness and kindness personified. B

  4. by Kal

    On August 1, 2012 at 9:30 am

    So true. Especially about becoming an expert in all things autism. I feel like I have several advanced degrees :)

  5. by Arlene Toro

    On August 1, 2012 at 9:36 am

    Congratulations !! Lisa
    This really hits home. Fantastic work

  6. by Eliana Tardio

    On August 1, 2012 at 10:03 am

    You are an amazing mom Lisa, not becuase Norrin has autism, just because you are a wondeful person and no matter how big the challenge may be. You always rock! love you and admire you a lot my friend!

  7. by Rachel

    On August 1, 2012 at 10:27 am

    Congrats on sharing your story with the world! Thank you for such an inspiring and eye opening post.

  8. by Carolina

    On August 1, 2012 at 10:36 am

    Your honesty and strength is empowering! Thank you for sharing that with the world, Lisa! So excited to read the next installment!!

  9. by Diane

    On August 1, 2012 at 12:26 pm

    Love it!

  10. by Unknown Mami

    On August 1, 2012 at 12:30 pm

    You rock and I am so glad you get to share your voice with even more people.

  11. by Chantilly Patiño (@biculturalmom)

    On August 1, 2012 at 12:38 pm

    Lisa, thank you so much for writing this post! Your words are absolutely inspiring and so on point. Sending you hugs and wishing you congratulations on this new platform! Felicitaciones amiga! I hope many more people will hear your amazing words and benefit from your stories. ♥

  12. by Dariela

    On August 1, 2012 at 12:52 pm

    I love that you are talking about this cause I have never heard or seen descriptions of parents of special need children before. I am happy to read you here Lisa!

  13. by kathleen

    On August 1, 2012 at 1:21 pm

    AWESOME!!! I loved the part of how we appreicate the little things. Ryan is 8 years old and has austim and is non verbal and when he say’s a word I cry and when he catches a ball I cry and throw he has a good left hand I cry and then heI email people. And when he does talk I’ll recorded it and play it back to him . He makes me appreicate the little things in life that he makes me see like the rainbow in the sky the birds.

  14. [...] To The Max (Parents Magazine) - 5 Things You Don’t Know About An Autism Parent by Lisa Quinones-Fontanez, AutismWonderland.com - On Twitter @LaliQuin | AutismWonderland on [...]

  15. by Pamela P.

    On August 1, 2012 at 3:02 pm

    Lovely post. My stepson and step-daughter-in-law are parents to an autistic boy and they so exemplify the fifth point about being the change you want to see in the world. I will pass this along to them. Thank you!

  16. by Carla @ All of Me Now

    On August 1, 2012 at 9:07 pm

    I love everything you write. And I’m so excited for this series! I think parents can only be better for learning about the experiences of other parents in similar or even completely different situations than their own. And, love the term “warrior mom”!

  17. by Sujeiry

    On August 1, 2012 at 9:31 pm

    I love your writing style. I love that you are a loving mom. I love that you are Norrin’s advocate. You are the true definition of a “warrior mom.” Great post, per usual!

  18. by Sofia Keck

    On August 1, 2012 at 10:11 pm

    Wow! amazing post. Very touching and very well written. =)

  19. by Uchi

    On August 1, 2012 at 10:11 pm

    I am so proud of you Lisa! I have been following you for about a year and you always have been an inspiration to me. you rock!

  20. by Uchi

    On August 1, 2012 at 10:14 pm

    I have been following you for about a year and you always have been an inspiration to me.you rock!

  21. by Diana

    On August 1, 2012 at 10:20 pm

    I enjoy reading your posts. They are heartfelt and sincere. It makes us who never lived thru or knew about this to open our eyes to Autism. It changes people perspectives and builds communities of hope. Good luck on this series.

  22. by RubyDW

    On August 1, 2012 at 11:02 pm

    I can’t agree more! You have taught this mama so much about mother’s of kids with special needs. What a great series this will be especially from a Latina mother to a Latino child with specials needs something our community hasn’t been open about.

  23. by Mama Meerkat

    On August 2, 2012 at 6:44 am

    This is so wonderful and inspiring. I think it can also be generalized to other special needs moms, too. :)

  24. by Lika

    On August 2, 2012 at 8:52 am

    Lisa,

    I was so touched by your story, and inspired by your spirit, I do not know what you do for living, but I assure you will be a great teacher especially for young kids, the same way you show how a great mother you are!
    In addition, we are all affected by the norms, while God created us different, and we are constantly struggling to copy those standards, who defined them as Malcom X, would have said, the definitions are changing.
    Thanks for sharing, and no one could be so right!

  25. [...] • Lisa of Autism Wonderland is a new weekly contributor to a Parents.com series called Autism Hopes which will appear on Wednesdays. Her first post, 5 Things You Don’t Know About An Autism Parent, can be seen HERE. [...]

  26. by AnnMarie

    On August 2, 2012 at 9:30 am

    My son is 16. He is amazing. Top of his class, AP clases, straight A’s….Snare drummer in marching band (talk about perseverative behavior!!).He’s a teenager, he is kind, honest, and yes, quirky! I love him not only because of who he is, but because of who he has taught ME to be!! SO porud of all of these parents who are their child’s advocate! We still have challenges (mostly social…he wants a girlfriend!) but when HE tells people that he is Autistic, “I have Autism, it does not have me” they do not believe him. We have come a long way from his perseverative, destructive behavior to a wonderful, talented musician who’s character I would put up to any ND person!

  27. by Ezzy Guerrero-Languzzi

    On August 3, 2012 at 5:29 am

    Beautiful and inspiring post, Lisa. Before I met you or started reading your blog, I knew little about autism. Thank you for educating me and raising awareness. And congratulations! :-)

  28. by Tammy

    On August 3, 2012 at 11:05 am

    I appreciate the little things, too. It’s amazing how much the accomplishments that my son makes matter. He works so hard, and it’s a celebration when he masters a simple task.

  29. by Patti DeLine

    On August 3, 2012 at 11:31 am

    This is a fantastic tribute to mothers with autism, but in many way could be applied to mothers of preemies, and mothers of children with all special needs. We never expect to be have children who need extra help, but thank God for putting us there. :)

  30. by Teresa

    On August 3, 2012 at 11:42 am

    Very beautiful spoken. You may not consider yourself a hero, but in the eyes of many you and all parents striving for the best for their children are that. My son does not have autism but has significant speech and cognitive delays, and it has been more than I expected, but I feel like not only has my son learned so much but so have I. I’ve also learned to appreciate all the little things…it’s the little things that count :)

  31. by Jenny

    On August 3, 2012 at 12:19 pm

    Everything is so true that you wrote. We are our own community…not just for ourselves but we do welcome any and all who wants to learn more about autism. This is an issue that is not going away but getting bigger. Thank you for your voiceing this.

  32. by Michelle

    On August 3, 2012 at 4:53 pm

    I had the pleasure of working with autistic children and their parents and I have to disagree with one point that was made above. I DO think that parents of autistic (and special needs) children are heroes and are especially amazing! :)

  33. by Bren

    On August 3, 2012 at 8:52 pm

    I’ve learned so much about you and autism through your blog. It’s wonderful to know you have a support system and that your passion shines through every word you write. Norrin is a very special boy!

  34. by JJ

    On August 6, 2012 at 9:27 am

    Great to see you’re spreading your message outside autism wonderland! Thanks for clearing up some misconceptions about parents of autistic kids.

  35. by Viviana Hurtado/The Wise Latina Club

    On August 7, 2012 at 8:23 pm

    Lioness of a mother! You are very modest saying that you are regular. Any parent is extraordinary and in my opinion those of special needs kids are extra special, too. Looking forward to reading more of your posts here.

  36. by Della

    On August 8, 2012 at 1:41 pm

    So beautifully written. I’m so proud of you Lisa. You have no idea how many people you touch with your written words, both parents of autistic children and not are inspired. Xoxo to you and Norrin.

  37. by Kathy corona

    On August 9, 2012 at 5:22 am

    Lisa, I am so glad that you are able to voice your thoughts and knowledge to the world. The world needs people like you to continue to educate not only families with autistic children but people who surround them and know nothing about it. Congratulation on being that warrior mom and keep educating and enlightening the world.