One of the wisest things I’ve read about parents of kids with autism is that we’re going through an extended mourning period. Yes. When my mother died, there was a finality to it, even if I did keep dreaming her alive and waking up feeling that I’d lost her again. But the DarMar situation goes on and on. Almost every day we face up to no surprises. And every day that happens, that’s grief.
The longer this blog goes on, the more it feels like I enjoy playing victim. Let me make something clear: I don’t.
Just to swing this over to the world of comedy, I saw Jerry Seinfeld on one of his webisodes telling Michael Richards he needs to let go of the day he shouted the “n-word.” If Richards couldn’t let it go, Seinfeld said, “That’s on you.” Jerry’s right. But how do you let go of your autistic child? How do you stop trying?
I recall reading that one of the hardest things about getting cancer is when you stop planning for the future. We think about the future more often than we think, if you know what I mean. “Oh, we’ll go there someday.” “You can do that another time.” This goes double for parents. “Maybe he’ll grow up to be a ____!” “Well, when you get older, you can try it, but right now…” We can’t imagine DarMar as an adult; it’s too hard to believe. Just losing that clear line projecting into the future is an incalculable loss.
I think you all know the five stages of grief. Denial? Oh yeah, we did that. After he was diagnosed with autism at the age of 26 months, he saw more clinical offices than a virus. We got a genetic test. We got 10 other LabCorp-related tests. We got an MRI from Dr. Birnbaum at Children’s – I still get queasy thinking about his little body being rolled into that huge machine. We had his hearing tested while I held him down between two speakers. We went for second and third opinions. After pinging between Alta Bates and Children’s Hospital, someone insisted we go to UCSF – like they know everything. We brought Dar and the DVD that contained his MRI imaging (and this isn’t just PDFs, there’s a lot more complicated 3-D and weird images in there). My memory of going there is of three thin, chirpy, thirty-ish women in lab coats taking turns telling my wife and I that no hospital in the world could possibly read this disk. (Had I taken it back to Dr. Birnbaum, no doubt he’d have said, “What do you mean they can’t read it?”) Of course, they chirped, we could schedule a new MRI, but that meant we’d have to come back, and I’d have to put him screaming into that machine again…at a certain point you have to say enough is enough.
Or do you? In our situation, you wonder. We never really took time for the anger stage because we got too busy with the bargaining. (You Elisabeth Kubler-Ross readers know that the five stages don’t actually move in a straight line, and that you can bounce back and forth between them.) Or as I call bargaining: using your resources. We started with Family Resource Network next to the Claremont DMV in Oakland, in the same building as Bananas. I love Eileen. Everyone loves Eileen except perhaps the orcs from Lord of the Rings. Eileen gets you ready for IEPs, and for free, but that’s hardly all. Let’s see, here’s the FRN packet. What we do: Information & Referral, Family Support, Parent Training, Family Advocacy, Advocacy & Action. And each of those is explained in detail. Then they tell you about Alameda County Community Resources (too many to name). Then they list information about some important agencies: Special Education Local Plan Area (SELPA), Regional Center of the East Bay (RCEB), Early Start, County Mental Health, California Children’s Services (CCS). For each agency, they explain how you’re eligible (if you are), income requirements (if any), and services provided.
If this sounds like a lot, let me say that we’re just getting started. I am so thrilled that most of you can feel relieved that you haven’t had to do this – I want to increase my thrills and your relief by telling you more.
I got the Autism Parent Handbook written by Kaiser Permanente. That’s got a long list of stuff (too much to name). I’ve got the Autism Spectrum Disorders booklet from the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) working with the National Institute of Mental Health (NIMH). It’s not actually signed by that Raul Castro puppet Kathleen Sebelius but as you know she can’t do anything right. The booklet tells you what to watch for, how to get a correct diagnosis, how to treat it, what science now says about dietary, medication-based, and other interventions, where adults with ASD can go, and a lot more. By the way, we did intervene with his diet and with pro-biotics. No breakthroughs.
Here’s a list of ASD support groups and organizations: We Care Autism Family Support Project, The Umbrella Club, Transitions to Adulthood, Fathers ASD Circle, AASCEND, California Chapter of the National Autism Association. I also get daily emails from Autism Intervention Bay Area and B-SPED a.k.a. Berkeley Special Needs Group. I’m also on myautismteam.com and I’m getting regular reminders that I need to update more. My wife and I also give money to Autism Speaks.
Yes, there are resources. And that’s a good thing.
Hey, apps are bargains, right? Perhaps you have heard that great strides are being made with iPads and similar devices. I’m not saying that’s not true, but to have a subject who can talk with images, you need a subject who wants to point to images OR at least choose between A and B (for example, Yes and No). I don’t have one of those. But then, it should still be easy to find something that will make Dar’s life easier, right? Here’s a list of apps recommended: ABA My First Words, ABA Therapy Images, AAC Evaluation Genie, All About Me, Articulate It, ArtikPix, Assistive Chat, Augie AAC, Behavior Tracker Pro, ChoiceBoard Maker, Communicating Basic Needs App, Dance Party Zoo by FizzBrain, Data Collecting, Fizz Brain: Quality Learning Games by Real Classroom Teachers, Game Factory, Grace Picture Exchange for Non-Verbal People, iAssist Communicator, iCommunicate, iMean, iPrompts, Kindergarten.com, Learn to Talk, Look in My Eyes: Steam Train, MetaTouch, Model Me Going Places, My Choice Board, My Healthy Smile, My Voice, OneVoice, Picture Planner, Proloquo2Go: AAC in Your Pocket, Quick Talk for Android, School Skills, See.Touch.Learn, Smile at Me, So Much 2 Say, Sosh: Improving Social Skills with Children and Adolescents, Speech Tutor: Pocket SLP, Speech with Milo, Splingo’s Language Universe, Talking Cards for iPad, TapSpeak Choice for iPad, Touch & Say, Touch Talking, and Visual Prompts Board.
So, that’s great, right? Not really. I know most of them are under $5, but that adds up. You start downloading the free trial version. And then that version sucks and you wonder if it would have worked if you’d ponied up for the real version. And you don’t really have time to try them all.
Just thinking about that list puts me somewhere between depression and acceptance. Good to know where to end!