Autism Mom Friends....What Would I Do Without Them??

Bobby was diagnosed with autism just months before his third birthday.  He had been receiving Early Intervention services through our state, but it seemed like it was a lot of planning with no implementation.  We just weren't getting the help that Bobby really needed.  I took Bobby to multiple evaluations with our county Board of Education before he aged out of EI services to have a plan in place for the school system to take over after his birthday.  Due to the fact that Bobby's birthday is in May and I didn't want to start him in school in May for only a few short weeks until summer vacation, we were left with a couple of months with no help.  Actually, I was a little relieved to have a break from all of these meetings and evaluations and STRESS!!!  However, the fact of the matter was, Bobby needed help and everything that I read stated emphatically, the earlier the help the better.

I made an appointment with a new mental health doctor for Bobby.  I am going to be 100% honest here, the real reason that I was making the appointment was my last hope that I was going to take him into this doctor's office and he was going to say, "That Birth To Three psychologist is crazy, there is nothing wrong with this boy!!"  Thirty seconds into the appointment it was clear to me that this wasn't going to happen.  However, I left this appointment more prepared than I had left any other meeting thus far.  I liked him.  He said, "Do this."  He didn't say, "What do you think that we should do?"  I left with scripts for neurological testing, therapies and follow up appointments with this man whose diplomas on the wall showed that he was a true Medical Doctor and he wanted to work in mental health and especially with children.  Now, before you all ask who he is, he moved away.  I have no idea where he is and honestly, I would have to go through old papers to even find out what his name is.

He said something during our first appointment that really stayed with me.  As Bobby was crawling all over this man's lap, and this doctor happily gave Bobby a pony ride on his knee, he said, "One day you will know every other autism parent in the area."

What did he know that I didn't????  Because at this point in time, I knew NO ONE and had never felt so alone in my life.  How was I supposed to met these people??  Was I supposed to go up to someone in a store when I saw their kid flapping his hands and say "Hi, my son has autism too?"  What if they didn't know yet, they would surely hate me forever.  This was pre-Facebook, so I couldn't search out other autism moms on there, besides, I had a 3 year old son with autism who I couldn't leave alone for one second.  I didn't have time then to be on the computer and when I was on the computer every second was spent trying to learn as much about autism as I could.

My first autism mom friend came into my life the day or two before Bobby started his first day of Pre-K.  Oh my word, the stress that I was experiencing at this time.  Well her's was even worse.  She was working outside of the home and didn't have anyone to watch her son for the 30 minutes from the time he got off of the school bus until she could be home from work.  When someone from the school came out to my house to do some paperwork the week before school was to begin, she told me of her situation and wondered if I could help (I had an in-home day care at the time).  The school person gave me the mom's phone number and told me to call her if I could, do nothing if I couldn't.

I called, she screamed (with relief).  Their entire family came over to my house the next day to meet my family and for the first time I was meeting a child other than my own who had autism.  More importantly, I was meeting another autism mom.  This woman and I live parallel lives.  Our kids are in the same grade at the same school and we have become the best of friends.

Our boys started school and were adjusting to their new life.  I started Bobby in Occupational and Speech therapies at a private therapy center to supplement what he was receiving at school.  His occupational therapist, who also owned the therapy center, was very optimistic about Bobby's motor abilities and just in general seemed positive.  So I began asking him questions.  This poor man, every time I brought Bobby in for therapy, I had a list of questions.  "Do you know anyone who's tried this?"  "Do you know anyone who.....?"  Through our conversations I told him that I was a social worker (in my previous life before autism) and I guess he felt confident enough with me being a representative of his business.  Finally, his response to my ever growing list of questions, "Would you like to start a support group here?"  Me, "Yes?!?!"

It really didn't take that much work to get started.  He let us use the building.  We picked a time, every second Saturday of the month from 10-noon.  He even provided childcare.  I made a flier.  He posted it.  I sent the flier to our early intervention program.  He sent it to a couple of mental health facilities in the area.

Our first meeting was full.  I couldn't believe it.  There were more people in my town going through exactly what I was going through.  They were tired, wanting to meet others, tired, excited to learn about different treatments that others had tried, tired, worried about their child with autism just outside the door playing in the big indoor playroom, and tired just like me!!!!

I continued to run the support group for the next couple of years, but after a while I didn't need the large group anymore.  I met my best friends there.  I see most of these people often in therapy office waiting rooms, at recreational events for people with disabilities, at playdates, at birthday parties,at school, and most often on Facebook.  However, a few of these women have become my life lines.

I have no idea why it helps so much to know that there is someone else out there going through the same things that you are.  Being able to talk to someone without having to explain things or sugar coat it has been such a help to my mental well being.  We save the real "nitty gritty" behaviors that our children experience for each other, and our families.  Even though our other friends want to listen and help, it just isn't the same...for me, at least.  Don't get me wrong, I love and cherish my other friends, but with them, our friendship wasn't formed on this one commonality, it is based on some other point in our history together....school, work, family.

With my fellow autism moms.....we laugh together.  We cry together.  We brainstorm together.  We cry together.  We vent together. We cry together.  We love our children through some extreme behaviors together.  We talk honestly together.    Most importantly, we celebrate the smallest achievements that our children make together.  Trust me our relationships and conversations are not 100% on autism. We do now how to go out and have fun!  However, therapies, doctors, medications, school, etc. are always going to be top on our topic list.

My number one suggestion to anyone that has a child just diagnosed with autism is to seek out a support system.  Look for a support group in your area.  The support group isn't going to seek you out and call you and invite you.  Most of the times these groups are run by moms just like me who just do not have time to look for new members.  You have to be the one to seek them out.  They will be more than happy to invite you in to the group!!!  Facebook is also a great source on support.  There are some great bloggers and sites out there for any topic.  You just have to search and join.  They too are very happy to make some new friends.

http://www.youtube.com/watch?v=KiQzUEc_FmI

So, to all of the autism moms that I have met over the past 7 years and to those who I haven't yet met....I don't know what I would do without you!!!!