Dear Self 3 Years Ago,
You just received Beth’s autism diagnosis and quit work to stay home with her. I know you are depressed and anxious about your little girl’s future. And to be honest, life as you know it will never be the same and things are going to get a whole lot worse before they get better. I don’t envy the road you will walk over the next 3 years, but you will come out the other side a better parent and a stronger and more compassionate person. You will let go the “shoulds” and “what ifs” and finally learn what true acceptance means. To help you on this difficult journey and to ease the path a bit, I have a few tips for you below.
Yourself in 3 Years
- What Autism is NOT is Very Important. Contrary to what many believe, these things are not part of the autism diagnosis definition, and in many ways they are more important for understanding Beth and how to help her: low tone, dyspraxia, motor planning impairment, ADHD, anxiety, sensory processing disorder, and visual scanning/discrimination impairment. Look these terms up and study them at length. Several therapists will tell you Beth’s “autistic behaviors” must be ignored or controlled through bribery and they will not look deeper to the core issues. Do your homework and don’t accept that there is no reason for behaviors that get in the way of Beth’s functioning. She is trying to tell you something.
- Embrace your sensory kid. Careful observation and supportive parenting will take you a very long way with this sensory kid. It is not about a sensory diet, it is about a sensory lifestyle! Beth experiences her world by her senses in a very unique way, and she seeks out and avoids certain senses. It may help to think of her as still in the exploratory developmental phase in many ways. But don’t underestimate her, because her sensory seeking and avoidance will change often and mature with time. It is also hard for her to use all her senses at once and integration will come slowly, but it will come!
- Just Do Something. You don’t know where to start and you are afraid to fail, but trust me, dive right in and just do something. Once you start, whether it be a new play idea, an educational session, or an outing, you will find your way and there will great value in the ideas that do not work out as you planned. If Beth resists your attempts to interact with her or teach her something, divide the task or goal into smaller concrete steps or go back to a previous developmental step to work on foundations. Don’t be afraid to put an idea or activity on hold and come back to it. This is not failure, it is giving her time to develop on her own path and you time to process the attempt and come up with new ideas. Also, if Beth shows interest in something, don’t be in a rush to move on to the next level. Just enjoy interacting with her where she is for a while and look for signs of readiness before you try to add more complexity or go onto another developmental goal. For the most part, development will come in very small expansions on familiar ideas.
- “Well, at least my kid doesn’t…” Take the advice of Bob Newhart and just stop it with these statements, because most likely she will do these things (https://www.youtube.com/watch?v=Ow0lr63y4Mw). She is not doing it now, but she will bite, kick, scream, meltdown, etc. but luckily for you she eventually grows out of it for the most part (for now, never say never, you still have the teenage years coming). The reasons for the aggression included communication delays, boredom, demand was too high for tasks, and extreme fatigue due to sleep issues. Also, she will be a big time stimmer, especially flapping and repetitive vocalizations in interesting voices. The stims will emerge over time and it shock you at first, but you will grow to accept them and learn how to use them. Her different stims will reveal her inner state and give you nonverbal clues to show when she is happy or uncomfortable (for example, sick, in pain, or needs to have a bowel movement). You will also learn how to use stims to motivate her to do non-preferred things and to help her cope in stressful situations.
- Sleeping. Brace yourself and pass the coffee. You will try melatonin with little success. You will try various locations and beds configurations, such as sleeping on the couch from ages 3-4, in a pack and play and a bed tent at 4, and finally sleeping in a large bed in the middle with several pillows surrounding her to prevent her from hitting walls when she flails her arms in her sleep. Foam board on her bedroom window to block out light and sound and the right noise maker helps. Exercise helps. But the biggest help is time. She will start sleeping much better at 5.
- Move It! She will have enormous difficulty moving from point A to B and moving her body. This issue is core, so it must be worked on every day. Music and imitation will be a huge help for her motor planning development. Also, hide her favorite mouthing items (edible toothpaste, floss) in various locations of the house and work from staring at the item a foot away to hiding it in separate rooms and using more and more complex hints. Any movement should be cherished, so welcome large therapy balls into your home, and encourage “traditionally forbidden activities” such as climbing on furniture and jumping on the couch/bed.
- Potty Training. Get out the Clorox wipes, because this is going to be a long, messy haul! Even now she struggles with understanding her potty signs and usually runs to the toilet only after the urge is dire. You made a lot of progress in tiny steps (first pee and poop on the little potty in front of the TV, then pee in the toilet but poop on the little potty in front of the TV, then you discovered she relaxes with certain visual stim like the iPad and marble run and used that to relax her before darting off to the big toilet for BMs, and now we are still working on requesting to go potty in public places). Through elimination diet you will learn she is sensitive to soy, almond milk and has lactose intolerance, and elimination or reduction of these foods will make BMs more comfortable for her and reduce the number from 4-5 to 1-2 a day.
- Respect the Physical Issues Behind the “Behavior.” Your biggest regret will be that you didn’t have PT and OT come watch the behavioral therapists while they worked with her and while she was at preschool. She can’t sit on the floor and in certain chairs because of low tone, so get her a fully supported chair, give her breaks, and let her stand at a table to work until she is ready to sit. She can’t pay attention to work presented to her because of visual scanning issues, so reduce clutter, use slant boards and recipe book holders, and encourage her to look across the whole field by sweeping across or circling the region she needs to attend to with your hand. She has tremendous difficulty with all motor planning, so reduce or eliminate these barriers, even going so far as to rest her hand on the table in front of a picture when you want her to point because it takes so much effort to raise her arm and then move forward. Because of physical issues, attending to tasks will take enormous effort, so short sessions are a must (at age 5 she is doing 12 minute sessions and uses a visual timer).
- Developmental Trackers Like the VB-Mapp (http://www.marksundberg.com/vb-mapp.htm) are Just Tools, They are NOT… a replacement for common sense, critical thinking, and good teaching. Because of the VB-Mapp, there is a time limit on how long the therapists will give your child to answer questions due to the core belief by behaviorists that taking a long time to answer is a behavioral issue. They will cut off your child’s thinking and feed her answers using errorless teaching, which she will grow to hate because she has slow processing and motor planning issues. You will argue that your child just needs more time, but you will compromise how long to wait, which will be a big regret. The therapists will want to work on all deficits, but use her strengths (naming colors, letters, numbers) or she will lose the skills and her confidence. The VB-Mapp advises that “barriers to learning” are mostly behavioral, which is wrong. Beth needs support due to all the physical challenges stated in number 8 above and it is the reason behind many behavioral “issues.” Do not let the therapists use the same language with Beth over and over, because she has trouble with motor planning, so when she finally learns a language pattern it has a tendency to get stuck. Be very wary of the goals in the VB-Mapp that have “or” in them, because it will be the cause of missing core issues, such Beth’s face blindness. Also, read the details in the secondary skills tracking list even if it is not required because Beth meets the milestone on the primary list. Otherwise, things like teaching yes/no will be missed. Fight for putting yes/no on the IEP even if the other therapists do not want to because it will “lead to less words.” Yes/no is empowering for your child and any language that is empowering must be taught first. There are many other issues you will have with the VB-Mapp, so be wary!
- Play Will Come Slowly and Will Be Unique. For the love of God, DO NOT GIVE AWAY HER FAVORITE BABY TOYS AND “STIM” TOYS! She has an emotional attachment to certain toys and she will ask for them when she finally has the words and you will end up buying replacement toys. Let her dump things and set out invitations to play on tables, because it is the only way she can find things with her motor planning issues. Play games where she searches for her favorite edibles among the toys so that she can find where her toys are located. Practice taking toys out and skip clean up until she can manage it. Eventually when some of her sound and spinning stims calm down, you will be able to use them to expand her play. Before she can play, she needs to be able to use her hands. Using her hands is difficult, so incorporate hand use into her favorite activities, like using tools while cooking, squeezing colored seltzer water from condiment bottles into other containers on the light table, opening up containers to get her favorite foods and drinks, flushing toilets to watch the spin, and using a gum ball machine with a twisty ramp dispenser to watch the gum ball spin down. Interactive play will start at 5 with activities like ball play, balloon play, interacting on trampolines, singing songs, and marching while playing instruments, but everything you do with her up until that point is a foundation for future play.
- Dressing. Dressing herself will come very slowly. Start with the things that are easiest for her, then move on. Independent dressing will unfold like this (from what will be mastered first to last): 1. taking everything off, 2. pants on, 3. socks on, 4. underwear on, 5. coat on, 6. shirt on, 7. shoes on (depending on the shoes, some are easier than others). The order is dictated by her motor planning, low tone, and body awareness, which impacts her coordination, balance, and ability to support herself while dressing. Teach her to find the support she needs while dressing (for example, leaning against a wall to put on underwear or sitting on the couch to put on socks).
- Find Your Peeps. Your peeps will be found on outings, at special needs music classes, and at special needs events you set up through meetups and closed FB groups. Online support will come from blogging, your Fumbling Thru Autism Facebook page, and the pages of special needs parents with a positive outlook. The most insight about your child will come from people who have autism and blog and/or write about their experiences (Judy Endow, Stephen Shore, Temple Grandin, John Elder Robinson, Daniel Tammet, just to name a few).
- Believe in Yourself. You will not believe me when I tell you this, but Beth will hit age 4 and you will decide that whatever many of the therapists are doing with your child is not working out, so you want to try some things on your own. You will decide to homeschool her for preschool at age 4 and Kindergarten. Several people will think you are nuts. But there is nothing wrong with letting your child learn to navigate the world, use her body, integrate her senses, gain more language to express needs, and cope better before she is expected to succeed in academics in a classroom setting. Isn’t that what we do for many young children and why should that be different for the child with delays and uneven development?
- Forgive yourself. You will get impatient, frustrated, raise your voice, miss cues, expect too much, expect too little, miss things, try things that don’t work for too long, etc. That is life. Forgive yourself, say sorry to your kid, and move on. You guys have work to do and a life to enjoy.