My son was diagnosed with PDD-NOS (a form of autism) 7.5 years ago. We were not surprised by the diagnosis, as we knew it was coming from previous appointments with the neurology team at MGH. In fact, I was grateful for it because it allowed Andrew to receive more intensive Early Intervention services. I didn't even bring another adult to the appointment, I had Andrew and his sister Emily with me. I got the prescription with the diagnosis and drove home without feeling much. I then called our EI service coordinator (Lorraine, I love you) and his pediatrician. It was later that night that I broke down. I cried so long and so hard I started getting Braxton-Hicks contractions (I was 30 weeks pregnant). I didn't blame as I am confident vaccines had no role in Andrew's autism. The lack of blaming "someone" or "something" is, to this day, one of the best ways I identified to cope.
The months that followed of intensive EI, Floortime therapy provided by Building Blocks, was a blur. In the middle of all of it, I gave birth to Sarah and Andrew transitioned to our public preschool occurred. When he was tested by the school, he had a few words, some signs, and very little receptive language. He was a hugely sensory kid who responded well to deep squooshes, being wrapped up and swung in a blanket, and a wonderful bear-hug vest. He was also very loving and did make eye contact with adults. Yet, he was very clearly on the spectrum.
Like nearly every other mother of a preschooler with ASD, I quickly became disillusioned by the programming offered by our school district. Knowing, but not accepting, that the mandate for services from a public school under IDEA is very different from EI, I pushed back. I advocated, I complained, I cried, and I wanted to change the rules and law and make them more friendly to families. I was so stuck with being angry and discontent (and in actuality the district didn't have an individualized program for kids who were somewhere on the middle of the spectrum as my son was with nearly all kids who were completely non-verbal), I lost a lot of perspective.
It's all well and good to be able to identify that life is unfair and systems don't always work effectively. After all, I was a savvy systems person. I was excellent at getting needed supports for my family: Commonhealth (state insurance which supplemented the private insurance from my husband's employer), reimbursement for the private insurance through the HIPP program, DMR supports (including flex funding for respite and a behaviorist), and pull-ups delivered to our door paid for by insurance. There was private speech and OT at Healthsouth, trips to the audiologist who had detected some form of hearing loss, switching pediatricians until finding one who specialized in developmental pediatrics. Add on to that constant communication with the school, team meetings every 6 weeks, independent assessments and appointments (like a neuro-pysch and a play therapist), as well as activities in the community such as "My Gym". It was exhausting, but my little boy started to talk.
Yet, I remained angry and frustrated by a system that was not set up as family-friendly. I gained weight. Only in my 20's, my hair started turning gray. I turned to food for comfort, I relied on friends for guidance and support, and autism became my world. With two exceptions, to this day, all my friends are moms of kids with special needs. My own family was tone deaf in many ways about the autism, only concentrating on the gains and happily giving him back when he had a hard time.
What I realize now, having been forced to take a few steps back and now watching my ex make his own poor decisions (he overly trusts and our kid has lost a lot because of it, including home based ABA) that hopefully he will learn from, is that I wasted so much energy and time being angry at the system. I work with many families of kids with autism and can see glimpses of the old me in them. I remember having the I want it "all or nothing", "my way or the highway" mentality for many years. While I don't think the school was always right (in fact, the concessions they did make over the years such as a 1:1 aide and an outplacement for summer services to give Andrew exposure to typically developing kids, do illustrate they realized they might have been wrong), I do now realize how pig-headed and foolish I was. I know I was right about a lot, after all Mass Advocates for Children took Andrew's case and got good results.
I am also keenly aware that one has to maintain a civil relationship with their school district, utilize the mechanisms offered via due process, and not make it personal. I am ashamed of how hard I was on Andrew's preschool PDD teacher and on the integrated preschool teacher who deftly worked with all 4 of my kids. I wasn't trying to be mean or difficult, I was hoping they could make a miracle happen and that my kid would be the 1 in 10 kids diagnosed with PDD who loses the diagnosis by age 6. Until I started working in schools and closely with teachers, I thought they were the "enemy" and only puppets of a sped administration. While they do have to be careful what they say, I forgot these people choose these careers because they love kids and want to help them. Their strategies didn't always work, but I think they truly cared about my kids being successful.
When I talk to clients who are at the stage I was at those many years ago, I try to get them to focus on choosing their battles. Special education law is written to benefit the school district, who has more money than any parent, and their lawyers on retainer. They routinely ignore independent assessments and never give them equal weight of school assessments. Services are often reduced or not offered (where my job comes in) when kids do need them. I get all of that and some districts are much easier to work with than others. If I can share any wisdom beyond telling parents that your instinct about your child allows you to be the best advocate possible, it's that you have to work in the system provided. If you refuse services because they aren't what you wanted, it just will reflect badly on you in the future. Mainly, if you have real concerns, take them to mediation and try to resolve them. Don't spend years/days/months complaining without being proactive.
Having a child with autism is not fair (in context, it's even more unfair to your child who has to live in such an overwhelming world). Do the best you can to advocate (even if it means filling out (5) zillion page forms from the state for services), apply for the programs available which can help your family (PCA hours, respite funds), and make sure to do fun things for yourself (ie: a date night with your hubby, a shopping afternoon with your friends, going to church to worship on Sundays if you can, taking a walk by yourself). The more balanced and happy you are as a mother, the happier your kids will be. Yes, kids with autism will still scream and you won't know why, they will still have meltdowns at the grocery store/park/drop-off/church, they will still need visuals and other communication to support their learning and communication... These things we don't have control over.
What we do have control over is taking care of ourselves and fighting the good fight in a way that we can be proud of. I am very proud of the fact that, with the exception of only 1 school staff member who thankfully no longer works for the school and was nice but hardly effective, each and every home provider who my family has worked with is someone I consider a friend and who, to this day, is supportive and kind and tells me what a good mom I am. (In my case, I was married, but all the autism-related "stuff" fell to me and me alone). I am not criticizing anyone as I've lived all I have written about, but know the journey can be a little smoother when you accept the mediocrity of the system, and work to change it while working side by side with your school and providers.
Andrew as a bear, dressed up to give out candy, Halloween 2009
