How She Does It: Krista
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I am so pleased to bring you this first special guest post in our How She Does It series: Homeschooling Moms of Special Needs Kids.
Seven-year-old Elena is passionate about fairies and a math whiz. She is diagnosed with high functioning autism/Asperger’s. Five-year-old Heather fancies all things fancy and is passionate about horses. She has Sensory Processing Disorder and Pica, a rare childhood eating disorder sometimes associated with SPD. They live in Virginia, USA.
Here is “How She Does It”…
Combining Therapy With Learning
Change your mindset. Therapy is learning. And often times, it’s the most important thing my kids needs to learn right now. It’s okay if a single meal or getting dressed or brushing our teeth take half the day. That’s the lesson for the day. If it’s a day when I have a kid motivated to do some self-care or frustrated with the fact we can’t, then those pretty little workboxes I have on the table just stay full of what they contain and we spend the morning eating two slices of apples with Heather. If Elena has some opportunities to spend time with new friends, then our morning will be spent buried in social stories and puppet theater to practice social skills, her pile of workbooks be damned.
I’m sure people with special needs kids can manage traditional homeschooling, I however could not, and at this point I am a proud unschooler…which doesn’t mean I don’t plan anything, it means I plan everything and I have a ton of different options for a given day. I am completely (ok, I try to be) accepting of the fact that sometimes what I have planned is not what my kids need to do. Unschooling for me means doing what my kids need to learn in that moment, ignoring the standardized, cookie cutter norm for what my kid “should be” at that particular age and grade. Elena wasn’t reading a single sight word in PreK or K, she didn’t read a single beginning “Step Into Reading” book, she couldn’t write her alphabet and though she had a great math genius locked up inside her head and was doing complex algebraic equations during oral play with mama, she would stare blankly at a page that said 4+8=?. Special needs homeschooling meant that I let go of my concerns about that.
Because that year Elena made a friend. She independently built a personal relationship. And the next year she was reading at a 4th grade level.
Getting Husbands and Family Involved
I just do not have a relationship where Dad takes half the program. And from everything I’ve read, neither do most people. Therapy is expensive, Dads work, kids do best with a primary caregiver and there is SO much stuff to learn.
In our house, I’m on tantrum duty, period. He respects that and I’m grateful. If we have a kid melting down, he resists saying “knock that off and go to your room this instant!” He lets me move in and take over without acting like there’s something wrong with that or that he isn’t being given due respect as a co-parent. He follows instructions well. I can move over to the kid melting down and say to him “Can you turn off the TV and dim the lights and help me reduce the sensory input in here right now? Can you grab the weighted blanket from behind the couch and then can you leave us alone for 15 minutes?” and he’ll do it, quickly and without questioning.
He steps over the mess when he gets home from work, microwaves Hot Pockets for himself for dinner and he never complains about it. He’s a sports nut and I know he would love more athletic kids. I know he had dreams of spending weekends at Little League softball and soccer and swim meets and even gymnastics and dance recitals. He thought this would be part of our lives, but it’s just not. He’s never seen them on a stage or in a field with their class or team. And I know that is painful for him. But he doesn’t complain about it and he NEVER allows our children to know that is something he desired or something he’s disappointed about. He will applaud thunderously when our 7-year-old accomplishes her first lopsided somersault. And he will stand at the playground patiently pushing the swings of kids who should have been pumping their own swings years ago. He always finds something to praise them for.
Early on, I learned that a huge part of successfully being a family that includes a special needs kid is having realistic expectations (which most of the time is having no expectations at all other than just having happiness in every day), not comparing yourself to any one, letting go of “normal”, and being extremely forgiving with each other….because we’re all just doing the best we can, kids and adults alike.
My husband encourages and reminds me to take care of my physical self by getting to doctor appointments. (I sort of wish he saw brow waxing and shoe shopping as priority care, but you know, you take what you can). When I am seriously burning out, on those rare occasions every couple of months where I tell him “I gotta get out of here, I gotta get away, I’m ready to lose it here and I can’t do it anymore”, he will take an entire day off work and let me go.
Truthfully, he doesn’t always have a great day when he’s alone with the kids and the kids don’t always have a great day without me. People will say, “It’s really good for them to have a day with their dad!” and I wish that were true for us. Sometimes I find myself lying about what a great time they had during their Daddy Day because the truth hurts too much. But they don’t and he doesn’t. They love their dad and their dad loves them, but my kids function best with routine. I’m their routine. With Asperger’s, routine is everything and changes in that routine, even when well prepared for, are challenging things. The cost of my own revitalization for one day is that everyone is burnt out and exhausted when I return. But sometimes I can’t help it. I have to recharge my batteries.
Turn Your Brain Off
I can’t take a Mom’s Night Out every other week. That’s not my reality. And my kids go to bed early and sometimes I do use that time for my “work” on the computer/reading/calls/
Read something non-therapy, non-kid related every day: the classics, true crime, poetry, bestsellers, vampire slutty romance mysteries, whatever you like. I spend a few minutes on my Instagram feed or scrapbooking. I turn up my MP3 player and dance. I let my kids see me do the things I love and I let them see me decompress and recharge in moments around the house and I really believe this is school too. If they see me handle my own anxiety and stress, I’m modeling for them how to do it. I don’t want to model that if you feel anxious and upset and distressed about a difficult situation, then you grin and bear it until Dad gets home and then you fly out of the house and never look back.
When no one is listening and when everyone is having their millionth tantrum of the day and screaming until I’m half deaf, I will step back and just say “Oh I am frustrated right now. This isn’t going how I planned and I’m out of ideas. I feel like I want to cry or yell, but I know that isn’t really going to help. But I feel like I don’t have any more patience. I need a break. I’m going to pour a cup of iced tea and go look at the blueberry bushes in the side yard and take a few deep breaths. When I am calmer, then I know I can try again.”
And lots of time two curious and subdued kids will follow me to the side yard and watch me take a few deep breaths and they’ll calm down too. Lots of time they are screaming at the me while I walk out the door and they are screaming at me when I come back in, but you have to decompress in midst of chaos for yourself. How can you expect your kids to do it if they only witness you bottling it up, if you never admit to them that you have had it with all of this and then do something that can help yourself find some inner strength, peace, or happiness? My kids see me get mad. They see me get tired. And they see me disappointed and sad. And they see me picking myself back up again, stepping back for a moment, brewing a cup of coffee and reading a chapter of my novel and flopping on the couch to flip through pictures on my phone. And they see me try again…and again…and again.
Prioritizing the Stuff of Life
Let it go. Just let it go. If you have a single clean pair of underwear in the dryer that is only slightly damp, you have successfully done the laundry. Clean your home on a “smelly” basis: Dishes, laundry, bathrooms, kids, garbage all stink and you have to get them done periodically. Dust doesn’t smell, so just name the bunnies multiplying under the furniture and be at peace. It’s fine to eat in front of the TV because the table is covered, again, with books and papers. Meals from the freezer that come in a bag and get sautéed for 5 minutes count as cooking. These kids will be grown and gone before I blink and my house will look like an advertisement page from The Container Store. This block of raising and homeschooling kids is not the majority of the years of my life. I was organized before, I will be organized and neat again.
If it’s March and you still have Christmas decorations up and all your trashcans smell like stale vomit from a 4 week bout of the flu, then hire a college kid for $15 an hour to come in a couple times a week until your head is back above water. And if that isn’t feasible, and you have relatives that live close enough and are of the helpful sort, then Grandma coming weekly to do laundry and stick a few casseroles in your freezer would be a godsend.
I don’t entertain and that’s just fine. My entire living room/dining room is a school area filled with hopscotch mats and chalkboards and art supplies and tiny buckets of marbles and snap beads. Say no or say maybe, don’t say yes…like ever. Write your datebook in pencil.
In the beginning, I tried juggling. After getting hit by falling balls for a while, I just stopped. And for a long time, I just didn’t have any friends. I was a parent 100% focused on my kids and their needs, who stole little moments to read Jennifer Weiner or watch Bones. If I took an afternoon off, I didn’t have a girlfriend to call to go with me. Part of it was the fact we moved around and my long-term friends weren’t local. And part of it was I didn’t have the time…or the energy. And I had just made up my mind that I wasn’t going to spend my life apologizing: “Sorry I cancelled.” or “Hope you understand that I had to bring my kid, Elena’s having a tough day and it’s not a good evening to leave her with Dad because the bedtime routine is especially difficult tonight.” or “Sorry I didn’t call you back, sorry my kid just threw that tantrum in the middle of your kid’s party, sorry I have to hang up immediately and without explaination, sorry sorry sorry.”
I stopped trying to explain every single detail all the time because it exhausted me: “No, we can’t go to the movies with you, given that the indoor lighting and echoey noises cause delayed sensory processing and eventually a shutdown of her auditory and visual capabilities and if we do that then we’ll be spending the rest of the night with her covering her ears and closing her eyes and screaming.”
“We have to leave early and I know my kids look like they’re having a great time and I’m dragging them away and I appear overprotective, but I have spent years reading the subtle clues to know when to make our exit before my kid starts biting herself and flapping her hands and so we’re leaving now.”
It was very lonely. It was very necessary. I refused to live like that, constantly explaining and apologizing.
I can’t walk into every situation saying right away “Elena has Asperger’s, Heather has SPD and PICA“. We’re so much more than labels. And it’s not my job to educate everyone in our path. Also, you know that saying: “If you’ve met one family with Autism, then you’ve met one family with Autism.” ? It sometimes backfires to share too much. People always “know someone” and they assume it’s the same for you. My kids eat gluten and food coloring and white sugar and that is fabulous if eliminating those cured your cousin’s children but for my children it would only serve to make an already difficult mealtime into something impossible. Sometimes it’s just easier not to tell people and just let them assume I’m a controlling, overbearing mother.
Once Elena was invited to a party of 30 kids at Chuck E. Cheese and we just couldn’t do it. This was back in the day when I felt the need to explain everything and I immediately said she had special needs, that we couldn’t do that challenging of a situation, thanks for inviting us, yadda yadda. I should have just said we had another commitment that day (a commitment to sanity). They haven’t invited us to their kids parties since, because “Elena can’t do birthday parties”. Yep, I over explained.
But then, this amazing thing happened. I started finding other people living life just like that; friends who didn’t require an explanation when I packed up my kids suddenly and just gave them a wave goodbye and didn’t look back. Friends who let me cancel on them five times and still invited me over again, knowing that on a different day with some newfound skills, it might be possible for us. I am so grateful that I found people who give us lots of chances, friends who were patient with my kids, often because they had kids of their own who required patience on an epic scale. Friends who said things like “How can I make this easier for Elena/Heather?” and “Is there anything I can do to help?” and friends who would let me rant and would respond with “I’m so sorry for what you’re going through” and “I think you’re doing an amazing job” instead of saying things like “Have you ever thought Elena would do better in a specialized school?”
Balancing Your Own Plate
Just Say No to extra commitments. You will disappoint people. If they love you, they’ll get over it. I know that people can’t really count on me. My friends can always call me for a favor and they understand that I won’t always say yes. I don’t bite off more than I can chew. I cancel stuff a lot. I leave early, arrive late, am not wearing the right attire, and waste money paying for something we didn’t end up doing. I miss family reunions and back out of vacations and don’t go to visit anyone on a holiday, which angers and disappoints some people in my family.
But I’m there for my kids. My kids can count on me. They know that their happiness is my priority. And I know that they are having a fantastic memory of Christmas all through their childhood of quiet days in pajamas with new presents and the peace and calm they require to fully enjoy that. I had a few early on holidays filled with obligations to everyone else and ended with kids on sensory overload shutting down. My husband and I just decided we weren’t doing that anymore. Some relatives got over it, some haven’t. The kids are happy. A balanced plate means happy kids and sometimes that means unhappy extended family.
Practical Tips for Learning at Home
- Crossing the midline activities work best when you’re engaged in a cognitive activity. I love file folder games or puzzles that have pieces they have to pick up and match with something else. Elena had no hand dominance at age 4, so we spent hours on therapy balls and scooterboards and swings: “Grab an A on this side, now make a quick choice and grab either an apple or a banana to go with it!”
- Cook together. There’s so much to be learned in the kitchen and it never looks like school. Reading, math, measuring, fine motor coordination, sensory play, etc. Pick recipes with cheap ingredients because you have to pour the oil like 6 times before you manage to balance that teaspoon enough to get it into the bowl. Also, always pour stuff over a sink. Take your time and don’t always talk to them about everything and try to make stuff too “lesson-y”. My kids get overwhelmed by that. If something spills, I watch how it spreads and express wonder at the increasing surface area. I remark how heavy a cup of flour feels in my hand and I switch it to my other hand to feel it there too.
- Let them try. Let them push the shopping cart at the store and stand on a stool to reach and grab the laundry and toss it in the dryer and let them fold things and let them stand at the sink washing dishes and let them make beds with you and spray the Pledge furniture polish and wring out their wet bathing suits and hang them on the line. I used to rush through all this stuff trying to keep my kids out of the way, because I had to do it “quick” because we had to “do therapy”…and then it dawned on me that this stuff IS therapy. If you’re conscious of what you’re doing and slow down, that proprioceptive input, that sensory and tactile experience and that core motor balance stuff is ALL around us in every single household chore. Plant gardens, walk the dog, take out the trash, pack a picnic. Do you know how much motor planning is involved to seal up a sandwich in a foldtop baggie? Try doing it consciously with a kid who has challenges in that area. Prepare yourself to sit for 15 minutes. And prepare for amazement when they master it.
- Hopscotch mats aren’t just for the numbers 1-10. And jumping is very good. So when my kids were little I’d put down all these pictures of animals and we’d jump from one to the next shouting “moo!” and “oink!” and “meow!” and I’d have pictures of body parts and we’d jump and have to point to where it landed and the kids learned where their nose and elbow and belly buttons were. We sing a lot. We read a lot. We’re outside a lot. We spend lots of time smooshed up all together in a fort or tent or on the couch or under the covers. Deep pressure is calming…for all of us. We all lay down with the dog and just pet him and do nothing else and it looks lazy to the common observer, but I know we are practicing self-soothing and getting tactile input and that we are taking deep breaths. We watch TV on our tummies. Fairy movies, not educational ones. We are practicing holding our bodies in that challenging prone position with head up, it’s strengthening our neck muscles.
- I do set up specific blocks of time for doing school or therapy. But I get the best results when we just live it. We live the learning and read and count and add and observe in everything we’re doing and the kids are involved the rich sensory experience of everyday life. You just have to slow it down is all. Slow it way down. And we do lots of stuff in front of mirrors. I found my kids do really well when they can observe themselves doing stuff, watching their hands in the mirror and watching my hands in the mirror.
My husband and I always wanted to homeschool. People often ask if we homeschool because our kids have special needs. The truth is, we homeschool despite it. My kids do have various therapists they still see regularly, but the majority of their therapy program is done at home, with me now.
I worry all the time, wondering if there is someone who could the job better, someone more quailfied, more experienced. My husband reminds me of the truth. The truth is that no one can do this job better than me. I might not be an expert in speech and feeding pathology, occupational, behavioral, or physical therapy. But I am an expert on my two kids. And there is no person who can be trained, educated, or paid to give them a mother’s love. My love for them is infused into everything we do. Homeschooling two special needs children is challenging and exhausting…but it is so worth it.
Thank you, Krista, for sharing your story with us! To read more about homeschooling kids with special needs, read Sharla’s Story.