You Are Not Alone

Hello Friends!

My name is Elizabeth and I have started this blog to share my family's journey with Autism.  My son "Franklin" (using an alias after his favorite storybook character) is 5 (almost 6) and has been diagnosed with high functioning Autism.  My goal with this blog is to share my story, to provide an honest look at life with an Autistic child and in doing that, help others.  I want to bring awareness to those who do not know about Autism, but I also want to let other Autism parents know that they are not alone.  When you have an Autistic child, it's so easy to become an island, to feel totally alone in this world.  I am here to tell you that you are not alone, and that there are many others out there just like us!

So let me start by telling you our story...
Franklin is 5, almost 6 actually.  He was born premature at 33 weeks, and from the get-go we knew something just wasn’t right.  He was a cranky baby, never seemed to be happy with anything.  He always cried.  Because of his prematurity, we were able to tap into the Early Access services, which he had from about 3 months old.  At 19 months he was diagnosed with Sensory Processing Disorder, and at almost 3 he was diagnosed with PDD-NOS, which is a high functioning form of Autism.  So there’s our history in a nutshell.  A little over a year ago my husband was offered a job at Energy Northwest and so we moved from Cedar Rapids, Iowa to the TriCities, WA.  We thought the move was the best choice for our family for many reasons.  It meant a pay raise for my husband, and moving closer to my family who lives in the Seattle area (which is where I was born and raised).  We had excellent services for Franklin in Iowa, we were on the Ill and Handicapped waiver, we had respite, ABA therapy, speech, and OT all covered under the waiver. I had help, I had time to take care of myself, I had opportunities to breathe.  I figured we’d have the same services in Washington, so we decided to take the plunge and move.  Just before moving, I also found out I was pregnant with my younger son N.  We ended up moving to the TriCities in January of last year.  As soon as we were here, I looked for a preschool for Franklin and applied for state services.  That is where the nightmare began.   In Iowa, the public school system had an AMAZING inclusive preschool program.  It was 4 days a week for regular ed kids, and kids on an IEP got a 5^th day for just special ed.  He also got his ABA and speech right at school!  When we moved here, I enrolled him in the ECAEP program and found out that it was not designed primarily with special education students in mind.  Franklin was forgotten at school, mistreated, and ignored.  I pulled him out of school about 3 weeks before the end because as we started pushing potty training, they refused to take him to the bathroom.  Franklin is prone to wandering so we needed a para to go with him, and they refused.  As a result, he was peeing his pants at school and they were just leaving him in it.  To make matters worse, about the same time we were flat out denied for DDA services because we were told that Washington State does not recognize a diagnosis of PDD-NOS and that we needed the report to say “Autism Spectrum Disorder.”  The psychologist who diagnosed Franklin at the University of Iowa refused to change the wording, and I was so overwhelmed with pregnancy complications and moving that I let it go. Meanwhile, we saw a steady decline and regression from all the progress Franklin had made in Iowa.  Noah was born in late June and Franklin continued to decline, his behavior went from “uncooperative” and “hyperactive” to downright defiant and aggressive.  Having a newborn and lack of sleep meant that I just didn’t have the energy to give Franklin the attention he so desperately desired. We hired a nanny, but that got very expensive and when she couldn’t handle Franklin’s behavior and energy anymore, she quit.  In September Franklin started school at White Bluffs Elementary in the structured classroom.  He did very well at school but his behavior at home continued to get worse.  With my husband working crazy, long hours, and me at home with an infant and Franklin getting steadily worse, I plunged into a deep postpartum depression.  I couldn’t even leave my house.  I was exhausted and I felt helpless.  I felt like nobody would listen to me, like his teacher would not believe me because he was so good at school.  I was desperate for help.  Franklin developed a “tic” which we later learned was “stimming” behavior. After Christmas I finally got myself help with my depression so that I could better deal with Franklin.  So here we are, June.  Franklin’s almost done with kindergarten and N still wakes up several times a night.  I find myself dreading summer.  I still don’t feel like I have the energy to deal with Franklin’s unpredictable and erratic behavior.  I am exhausted and I am still in a very negative place about his Autism.  We just had him re-diagnosed so AT LEAST we can get some state services and we have him in new therapy and participating in a study at Seattle Children’s, so there is progress to be made, but I still can’t help but feel stuck.  I feel like most days I am just surviving my life and surviving my son, when I really want to live and enjoy each and every moment.  I know there will come a day in the future when I will look back and wish that I could have enjoyed Franklin more, and as I write this there are tears running down my face.  I am desperate to leave this survival mode, but I feel like we are stuck here with no way out.  Most days I feel like I am suffocating and cannot breathe.  I feel sad when I see people out in public with their families, enjoying time together.  I feel like I cannot even take my child in public because it’s such an ordeal.  I cannot go to playdates with him because he is aggressive with other children.  I cannot tell you how many parents have refused to let their children play with Franklin.  It’s heartbreaking.  So I feel alone, isolated, and very lonely.  I feel like there is nobody out there who understands my life or really “gets” it.   These are the things that many Autism parents are afraid to admit.  These are the things that are my truth.  Yes, there are many, MANY things in my life for which I am grateful but I feel like I cannot focus on those things right now because my life is so consumed with this emotionally exhausting and energy draining thing called Autism.    I am tired of everything always being about Franklin all the time.  I am sorry if that sounds selfish but I would love nothing more than to have some time to visit with other adults or have time to myself and not constantly worry about Franklin or what Franklin is doing.  I would LOVE to set up time for play dates, or go to the park without having to worry about Franklin being aggressive with other children or bolting and having to run after him with a baby in my arms.  I would love to be able to get through the grocery shopping or run errands without having to worry about what I am going to do with Franklin or how I am going to keep him from pulling things off store shelves or running away from me.    I am trying hard to find a path to that hope for Franklin and for our family but it is slow going.  What I need is help.  What I need is room to breathe.  What I need more than anything is to get the reality of living with a child with Autsim out there for all to see.   
Through all these feelings though, I also think about what it must be like for Franklin, and then I feel guilty for how I feel.  Imagine if it is this hard for me, what it must be like for him to live with this each and every day!  To constantly feel like your world is attacking you must be unbearable.  The reality is though, that we all need to feel how we feel so we can deal with those feelings productively.  Autism parents need support, love, and understanding, just like people with Autism need support.  
I have found that it is really important to connect with other Autism parents.  I've found an amazing group in my area of Autism families and it's so refreshing to find those who truly "get it."  Not only do the parents get support, but the kids are able to get together and socialize without the fear of other parents judging.  This group has been a lifesaver for my family.  It was started by a mom just like me, who just  needed to feel connected.
So, please, don't feel alone.  Know that there are many of us out there who feel and experience the same things you do...reach out!  Contact me!  I am happy to talk!