One Day is Not Enough
For about two years, I was a stay-at-home dad. I cared for my son Mikey in all the traditional ways: I dressed him, fed him, took him to school and back, and played with him. But the one thing I could never do for him was to be his mother.
The term mother, and all the good that goes with that, can spark many loving images in our minds. And autism moms are even more incredible with their focused dedication and devout love and compassion. Their actions and experiences should truly be celebrated and recognized.
In honor of this month’s Mother’s Day holiday, I spoke to a few autism moms I know (Kristine V., Tara G., Christine M., and my wife, Lynne). I asked them about their experiences with autism and any advice they might have for new autism moms. What follows is something I could never give you on my own: autism through a mother’s eyes.
A little background on these amazing moms: All of their children were either Mikey’s classmates or attended the developmental school where he spent the first three years of his ABA-based education and all of the moms were involved in some way with the school’s young autism program charity. Kristine’s son was 2 years old when diagnosed with autism; Tara’s son was first diagnosed as PDD-NOS before he was 3 and then with autism at 5; Christine has two children on the spectrum, her daughter was 2 and a half when diagnosed with PDD-NOS and that was changed to autism at age five, her son was diagnosed at 2-and-a-half with PDD-NOS and remains with that diagnosis now at 4; and Mikey was diagnosed with autism at 20 months.
I asked these magnificent moms what their personal feelings and reactions were when they first learned of their children’s diagnosis. They all shared similar feelings of sadness, but also determination to help their children:
KRISTINE: I was very sad when [my son] was first diagnosed. I was angry and wondered why it was happening to my son. Once my feelings were put aside, I just wanted to do everything I could to help him.
TARA: My first feeling was, “What did I do wrong as a mother?” I thought I did something wrong during my pregnancy. No matter how many times everyone told me that it had nothing to do with me, I just did not believe them.
LYNNE: I felt overwhelmed that our child was not going to be “normal” and would need a lot of extra care. I didn’t have any confidence that I would be able to handle everything that would come our way.
CHRISTINE: Sitting at my kitchen table, answering the psychologist’s questions had a very bizarre rhythm to it. I found myself saying “She used to do that, but she doesn’t anymore,” repeatedly…So when the psychologist put down his pen and very carefully, and delicately, informed me that his diagnosis was PDD-NOS, I was not surprised. I was pregnant with my twins [a boy and a girl] when my daughter was diagnosed and they were the subjects of intense scrutiny from the start. At 2-and-a-half, my son’s behaviors started and we requested an evaluation. I knew that he would be diagnosed. When I heard the words, I could not help but cry. It was a kick in the stomach, the sensation of, “Not again, why him? Why us? Someone was supposed to tell me I was crazy. Can I handle this?” And after my five minute pity party, I was back on my mission, plus one, to do whatever was necessary to have my children reach the best outcome possible for them.
It was very heart-wrenching to hear their comments, but when I asked what their first steps were post-diagnosis, and what they found comfort in, it made me realize how strong autism moms really are:
TARA: My first thing…was to stop working. I needed to be home a lot more and that was the only way. I started asking as many questions as possible about his diagnosis to anyone who I thought had experience. I was lucky to have a very good case worker from the county to help me through this.
KRISTINE: I started to look at schools and find out as much information about schooling and home services as I could. I found comfort in talking to other mothers who had a child with autism.
LYNNE: My husband and I met with the county child services coordinator who helped to schedule ABA home services. It was comforting to see how many people seemed genuinely concerned about getting our son the services he needed. My husband [editor’s note: I swear I didn’t bribe her to say this] has always kept a very positive attitude, knowing that our son could do whatever he set his mind to. He has helped me consistently when it wasn’t so easy for me to see it that way.
CHRISTINE: The first step was to get each child into the best program possible [in this case ABA]. We also consulted with a pediatric neurologist to ensure we were covering all bases for [my older daughter]. Since her regression was so severe and so quick, more testing was suggested for her to rule out other causes for her behavior. The prospects were frightening: seizure disorders, a brain tumor, genetic disease. Thankfully, all of those tests were negative. I have found comfort from many sources in dealing with the diagnosis of our children. The support of family and friends has been amazing. Something like this also tests the metal of a friendship. You really learn who is there for you, who you can count on and, sadly, with whom it might be best to cut ties. The camaraderie of the parents who share our experience is invaluable…there is no greater resource for parents of children with autism than each other. I have also found peace in simply loving my children for who they are, not in spite of it.
When asked if they faced any challenges in getting services for their children, the moms were not to be deterred and, for the most part, eventually had positive experiences:
LYNNE: We have been very fortunate to have had some wonderful teachers over the past five-and-a-half years at both his autism program and within the school district. We feel that the services offered to our son have been quite comprehensive and we did not experience difficulty in securing them.
KRISTINE: I have been very lucky and blessed with getting services for my son. His school district has always steered him in the right direction. I have had great teachers along the way and they have helped me to be my son’s best teacher.
CHRISTINE: I have had a remarkably positive experience in getting services for my children. I cannot say that everything has gone perfectly smoothly for both of them in the classroom, however. It has sometimes been a battle to be heard by those who are teaching her. In the end, I know that they are all trying to do the right thing, but that we do not always agree on what the right thing is…all any of us can do is try our best to find the right formula.
TARA: It was, and still is, hard to get services with my district. When he was originally diagnosed with an ASD from the CARRS test (given by a psychologist) they (the district) told me I had a typical two-and-half-year-old child. They completely disregarded that report. I was lucky that my case worker was there and she suggested the developmental school to me (integrated class) to at least get his foot in the door. Then we went to an MD to get the diagnosis and back to the table at district for a third time in one year (because the classes were not helping him, he was getting more lost) and demanded more. We finally were able to get him into the young autism program. There is where I found comfort. I was able to talk to other parents who were experiencing all the same tough stuff that I was. I was not alone…and neither was my son anymore, either. I saw immediately that he felt comfortable.
I believe that the autism community is one of the most valuable resources we have for helping our children and I finished up my interviews by asking what advice or tips these moms would give to mothers of children with a new autism diagnosis:
CHRISTINE: The best advice I can give is to try to get passed the label. That is, to look at the label “autism spectrum disorder” as a means to an end. An explanation for some of the unusual behaviors that your child displays…but it should never define or limit your child. Autism is a part of who they are, but it is far from all that they are. As your child’s most important advocate, they will depend on you to recognize this and communicate that fact for them. Learn all you can about how to teach your child and how to navigate the system…and always keep in mind that the goal should be to allow them to become the best possible version of themselves.
KRISTINE: You have to put aside your own feelings and try your hardest to get your child into a great school at as early an age as possible. I did not want to send my 2 year old to school fulltime, but it was the best thing for him. You have to be strong for them and follow through with whatever it is they are doing at school. You have to learn how your child is able to learn. It’s going to be you who has to make sure that your child is being taught the right things (my son is not verbal and learns a specific way). I am very involved in his education. I allow myself one time a month to break down and be a mess, and for those other 29 days I am my son’s rock!
TARA: Unfortunately, I have been giving a lot of parents with new diagnoses for their children advice. The first thing I say is that they are not alone. They are not the only mother in this world that is dealing with this. I tell them it is ok to cry, to just let go. Then I tell them my story and how, even now, I still have to fight for my child because I am his best advocate. Then I say that it does get better, even when you absolutely feel like it is not going to get better.
LYNNE: As soon as you have the first inkling, have your child evaluated. Early intervention is truly important. Educate yourself, and anyone involved in your child’s life, about autism. Remember to always see them as your child, not an autistic child. Make sure to discipline them, teach them, and most importantly, love them.
I have known these autism moms, and others like them, for a number of years. It has been an honor to watch them care for and advocate for their children and I have truly learned a lot from them. I know there are many, many other autism moms out there who have probably been nodding their heads as they’ve read this article…I hope that I’ve given them a sense of community and a chance to smile at the knowledge that they are not alone.
For me, one day in one month in the middle of the year is not enough to celebrate moms like this. I know Mikey and I appreciate and love Lynne more and more everyday for all she does. To Lynne, Kristine, Tara, Christine, and all of you autism moms out there, I say thank you and in the eyes of your children, please know, everyday is Mother’s Day.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at firstname.lastname@example.org.