I’ve spent the last two years not writing this post. The first year it was because I felt that if I said my son had a disability(ies), it would be true (and I really really really did not want it to be true).
Later it was that I thought I should keep this part of my/our life private. But I’ve realized over the last few months that if you know us, if you ever get to know my son, then what I write here will not be a great surprise.
And after being truthful and open with other families recently, I’ve seen that we are not alone. I’ve met some kindred parents in the last few weeks and had wonderful wholehearted conversations with people who ‘get it’. The kind of conversations that I’ve been craving for years. So maybe I can find a few more of us from writing this post.
Our son’s disabilities have been a big part of our life the last two years. It has taken up a lot of my mental and emotional capacity. It’s one of the reasons I haven’t been writing on the blog as much.
I hope that by sharing here I’ll feel more comfortable writing in this space about our continued quest to live a bit smaller and simpler – without feeling that I have to censor myself.
One of my children has several disabilities that make our life complicated, often stressful and far from simple.
Some days it really sucks. Some days I feel very isolated. Luckily I don’t have a lot of those days and when I do I try to remind myself that everyone faces challenges, some we see, some we don’t. And I also remind myself that I’m learning a lot about myself in this time.
I’m becoming more resilient and a lot more patient. Parenting a child that faces a lot of challenges in his day to day life has made me grow.
My son’s disabilities have also forced us to be minimalist-ish in a lot of areas of our life. I think my son’s disabilities, the challenges they present to our family, is one of the reasons I continue to be so attracted to minimalism.
When things I cannot control are complicated, I feel the need to make the things I can control as simple as possible My son’s disabilities have taught me a lot about minimalism, why we need it and why he specifically needs it to make his life a bit easier.
Keep Simple Routines & Easy Schedules
Over-scheduling for our family looks different than for most.
We can only have one half day ‘big’ event at a time. That day needs to be followed by a quiet day of rest and routine. So going to a model train exhibition in the morning and a birthday party in the afternoon, with a full day event the next day, is a recipe for a lot of tears and meltdowns and leaving early.
All that ‘fun’ quickly becomes unfun for us.
Our two other children can handle more taxing events and when it’s possible for them to do that, we try to make it happen. But the overall schedule for the family is mostly dictated by what works for our child with the greatest needs. So we do a lot of the same easy and local activities that we can easily adjust/drop out of if need be.
Stop Comparing Yourself to Others
After a few years of your child not having a typical development pattern you FINALLY learn to stop comparing your kid (and yourself) to others.
A few years of leaving parent teacher conferences with red rimmed eyes, have got me to a place of only comparing my son to himself. His progress is on a graph with… his progress.
It’s been very hard to get here but I feel that I’ve stopped comparing him to other kids. In turn, I’ve let go of another layer of comparing my life to others.
One of the ways we get in the buy more/want more cycle is watching our neighbours, counting what they have and comparing it to our own pile of stuff. Having a child with disabilities really pushes you to stop comparing yourself/your kids with others.
Boil it Down to the Essential
We simply can’t do ‘everything’ for all three of our children. We don’t have enough time and energy and money to run our own part-time forest school, teach them a second language and do whatever else is on the ‘must do to achieve any success in life’ checklist these days.
We do the basics: brush teeth, read as many books as we can and get time outdoors.
The ‘essentials’ for our son with disabilities include therapies, tutoring, doctor’s appointments, medications that have to be adjusted and notes taken on and lots more. We don’t have the bandwidth to find extra, nonessential ways to complicate our life even more. The basics are good enough!
Own Less Stuff
If you have a child that is highly distracted and gets overwhelmed, it’s best to not have a lot of stuff for them to get distracted and overwhelmed by.
So yes, we do have toys, but we try to keep them in one place and not have too many of them. We cull their stuff regularly and remove what isn’t being used. We give modest and few gifts at birthdays and at Christmas.
We are slow to introduce new things.
The kids are 2, 4 and 7 and are just learning to ride bikes for the first time now. For many years they all just had kick scooters to get around on and have fun with and that was enough. Introducing another option for them complicates things, can overwhelm them and gives us three more things to maintain, store and worry about.
Try to Live in the Present
I’ve spent a lot of time worrying about the past (what did I do wrong that caused this? how could I have gotten him help earlier?) and the future (how will he learn to ____? what will life look like for him at ____? how will we get ____ help?) for my son with special needs.
But as we have gone further down the diagnosis route and finally into the therapy/management phase of his disabilities, I’ve learned to live in today a bit more.
I cannot change the past, I do not know the future, I can only do the work of today. I’m not perfect at living in the present (nor will I likely ever be) but I feel myself living more in the day right now than I ever have before.
Credit to my quirky beautiful son that keeps me here.
Having a child with disabilities has made me lean into minimalism.
It’s not a pretty Instagram-able kind of minimalism of nicely folded clothing and spartan rooms with white walls.
Some days it’s an exhausting, tearful frustrated kind of minimalism that leads you to make sandwiches for dinner so you can simply sit with that kid that really needs you, needs to be hugged and seen, needs a level of patience that is hard for anyone other than his family to give him, in the time you would usually prepare dinner.
It’s a kind of minimalism that has you putting the spring community center programming guide into the recycle bin as soon as it arrives because your child is not in a season of being able to follow instructions, participate or enjoy after school soccer.
It’s the kind of minimalism that has nothing to do with what your home looks like but rather what your home feels like: a safe and easy place for your child to just be his or her self.
O my goodness….you don’t understand how happy it makes me to have come across you & this blog. This is so our life too. We have 2 kids of which the 2nd who will be 11 in May is disabled. 100% dependent on us for his care…immobile, no verbal, tube fed, everything. But he is literally the happiest child & brings so much joy to our family. But reading this I was tearing up because it felt like I could have wrote this. I relate on every level of this. Thank you for writing such wonderful pieces. It really makes me stop & think more about minimalism in our life.
Thank you for leaving this note, Christina, and I’m so happy you connected with my sentiments about having a child that is different. The journey just keeps going with new surprises about who this person is and what he loves. Big hugs to you and your family and keep on enjoying the love from your awesome son 🙂
Wow. I needed this today. I started following you when I was first pregnant and stressing out about people living in a 1 br in NYC. Our son is 6.5 now and we are still here! While we are not really ‘true’ minimalist, I am very inspired by more minimal and intentional living. And we are now facing a final diagnoses for our son for possible sensory issues. The stress has been very real. Even knowing we are not alone, we still feel very alone as the melt downs and calls from school have been increasing (hopefully soon to be helped with a 1 on 1 para) but so much of what I have been feeling were echoed in this post and I sent it immediately to my husband. Thank you.
Jessica: big hugs to you. I know that loneliness well. There were some really tough years where I felt so alienated from the other parents around me that had neurotypical kids. Happy to report that two years out from his diagnosis, things are better. He’s still the same kid with the same challenges but as a family we have made changes and pivoted expectations to support all of us. Trying to keep our stuff and our schedule simplified has helped a lot during this time. If you have a chance to connect with another family on a similar path, I really recommend it. Just yesterday I went for a long walk with an acquaintance who’s son received an ASD diagnosis in the fall and had a chat on the phone with an old friend who’s son has similar challenges to mine. I try and connect with these people at least once a month. Just talking to people that understand our situation takes some of the pressure off.
Good luck!
I can relate! My youngest son has autism, and my life is just like that.
Minimalism just happened. I prefer to stick to what is essential at the moment, and let everything else flow away.
About living in the moment… planning is useless. Therefore, we live in the now.
Isn’t life awesome? What we considered a problem turned out to be the solution!
I love my kids, I love my husband, my family and friends, and specially my Creator. I care about the Creation. I like to read.
Everything else (social expectations, gossip, keeping up with the joneses, and such) can flow away…
Blessings!
Another reread and another few morsels of wisdom for me now that we have our diagnosis. Thank you again for sharing
I thought I commented on this Rachel but perhaps I forgot to. This post really helped me as we are on a journey towards (maybe or maybe not) ASD for my 2.5-year-old boy. I’m not sure what it’s like in Canada but in Australia, the doctors are very cautious about labels and diagnoses and our journey has been very very slow. We have had many difficulties from the end of my pregnancy including a life-threatening illness. extreme gastrointestinal problems and now developmental delays and differences that have brought us to this moment, the moment where we will begin the ASD assessment soon. While I expect if he is ASD it will be mild or moderate, I am fully aware of the gifts I have and the ways I am blessed in life. But … one of the most challenging aspects of my life right now is opening up and talking about our difficulties and being brave enough to trust my own instincts. I too write about minimalism yet I often observe how hard it is to practice it the way I imagine myself to. Best wishes to you and thank you for sharing.
Thank you so much for this post. I feel like I could have written it myself as those are the same thoughts and feelings I have been having over the past two years. My boys are 6 (almost 7), 4 and 2. So many things expressed here have made me feel not alone. Thank you for sharing your story. I, too, throw the extracurricular activity fliers in the trash as soon as they come and there have been so many things in my life that have needed to change to accommodate his needs. I will keep coming back to this post to remind myself that I am not alone! Thank you!
Me too Lisa, about the extracurricular fliers and the adjustments to life. I’m still very new to this and it’s really really hard
beautiful post! you are such an example! Very thought-provoking and a lot I will be taking away personally. Thank you!
Good for you for seeking community on this, you are never alone.
In fact, I am a little surprised since so many children I hear about have these problems that it seems to be the new normal, at least in my perception. It’s clear it’s not easy to deal with (my eldest grandson also has an ADD diagnosis) but you moms are all doing a great job and I think that keeping things simpler is very helpful. The world we live in is overwhelming, more so the expectations that have risen to a ridiculous level.
One thing we say a lot is to focus on what these children CAN do rather than on what they can’t do. Certainly in our 8 yera old grandson’s case, there are many things he’s actually really good at but sometimes to hear his environment, you wouldn’t notice… that is sad. He’s a lovely, affectionate, caring little boy/big brother (to 3 siblings), with some great skills and in time he will learn all he needs for a fulfilled adult life of home and work.
Thanks for sharing this piece of your life. My younger daughter was diagnosed with a serious genetic disorder in January, and everything that goes with that has been overwhelming and exhausting. Your thoughts gave me a little more perspective and pointed to some concrete steps I can take to start to get some control back (or just let go of the stuff that doesn’t matter), while being a little nicer to myself.
Thanks Pam 🙂
Hi Rachel, I have turned to minimalism solely because my Daughter has a sever disability that has left her unable to walk, have purposeful use of her hands and she is non verbal. There are so many additional responsibilities and accommodations we as parents of disabled children have to make that minimalism just feels right. I know it is very hare my daughter was diagnosed at 15 months and she if 4 now. I have my good days and my not so good days. I have to say however that I am so proud to be her mother and when I take her out in her wheelchair and people stare I am proud this beautiful child is mine and that I will make sure she gets what she needs.
I am not sure what your sons diagnosis is but don’t think you are ever alone there is support out there you just have to reach out and accept it.
Thank you for your post. I fell into Minimalism for similar reasons. I found your post really resonated with me and gave me fresh ideas on how to better manage life in a constructive manner even when things seem overwhelming. Thank you 💐
Rachel, Hugs to you and your family.
I/we’ve been there with my 10-yr old (and are still there, though it’s getting better). I have a child with Aspergers, ADHD, food allergies and high sensitivity (the lockdown drill at school = nightmares). He seems like a regular kiddo when you meet him. He wasn’t diagnosed until 2 yrs ago, and although it helped me understand somewhat his difficulties in making friends (and being bullied), it didn’t elicit any understanding or empathy from other parents at his school. I’m the only mom in this chi-chi town whose child isn’t perfect. At least, that’s the way we’re treated. I know there are other families here dealing with similar issues, but everyone hides their struggles and pretends to be TV-perfect. I’m so glad to hear other readers’ families have found local support, though that doesn’t always happen.
Finding online other families experiencing similar issues has been a Godsend for my own stress levels, as well as for finding helpful input for IEPs. For me, it means understanding that there will be blame and resistance piled on to everything else I/we have to deal with on a daily basis, but that’s life and I have to kindly yet firmly persist in order to provide whatever my children need, including a home that is always loving and safe (according to his extra perspectives).
We’re not minimalists, but we do have to stay extremely organized. In contrast, our littlest one is highly allergic to being neat or organized or to cleaning up after himself, so having less will definitely help there.
Thank you for posting your piece. It’s hard to open up about these things, yet it is such a huge help to so many who don’t have local support and who may be at one of those points in the cycle where it feels like every day is a struggle. We’re at a good point in the cycle right now, but it’s a long-term trip.
Ingrid – Yes, finding community that understands the challenges is so important. I’m just doing that now.
Big hugs to you, Rachel
Thank you so much for what you’ve shared here. My daughter isn’t neurotypical either and among the many challenges, has been trying to explain to family why more isn’t better for us, and frankly, comparing ourselves to peers in the community and wondering why we can’t seem to manage the same schedule, outings etc. The experience you’ve described is so familiar and it is so helpful to ‘hear’ voices like yours and others leaving comments.
Katrina – I wondered for years why we couldn’t seem to manage the schedules other families. It’s just in this last year with my son getting more help and a diagnosis that I can see we have extra challenges and road blocks in our home life. Another family’s fun day out is a tough day for our whole family and one that requires days to recover from. It’s just in this last year that I have been comfortable saying no to things that I know won’t work for my son or asking if we can adjust activities to fit his needs. It’s also been a long road to helping our family understand that our son has problems that won’t be solved with extra hugs and more gifts. His problems are not a season but something he and we will manage the rest of our lives.
Big hugs to you and your son, Rachel
Thank you for this. I felt a sincere connection to your statement, “When things I cannot control are complicated, I feel the need to make the things I can control as simple as possible.” I could write a page about the complexities of our life (husband orphaned a s a child, I lost my mother as a child, I have a leadership role at work that requires much out of me, I travel, my husband travels, and out six year old has autism to name a few.). Thank you for a couple things 1) showing people that minimalism doesn’t need to look like the instagtam and Pinterest posts we see and 2) not to be afraid of talking about your son. I am actually just recently overcoming that, highlighted mostly by accepting an offer to be one of four speakers at a local anti-bullying autism conference. Keep writing, keep sharing.
You’ll help the world embrace the beautiful neurodiversity in this world.
Big hugs to you Melissa. It is so hard to talk about your kid that is non-neurotypical. I have worried about him getting labelled, about families not wanting to socialize with us, about sharing that things in our home are not easy and it’s not just a season but years of not easy ahead of us. I’m trying to make more connections with families like mine. It helps.
Please, please keep writing posts about this topic. I found myself on the verge of tears while reading this. My autistic (high spectrum) son is almost 11 and everything has always been harder and taken longer with him. I have two younger neuro typical boys and struggle with not letting my older one run the household because of what might set him off. This post gives me hope.
Jennifer – you’re a few years ahead of us in age but we also have three boys with the oldest being non=neurotypical. I will keep writing about this subject in my posts here. It’s one of the reasons I wrote this post – my oldest son’s disabilities affect most of our home life and decision making right now. I can’t talk about any of these choices without talking about their necessity and the challenges that go along with all of it. Not talking about it for the last two years has made me not write here. So yes, I will be talking about the sadness and frustration of my four year old learning a lot of skills easily that my seven year old has yet to master. And that it’s not always our toddler that makes it challenging to get out the door, it’s his older brother that cannot get dressed without dozens of reminders. And that our living doesn’t have a lot of furniture in it not just because we are into living with less but because my oldest son needs room to pace in circles in our small apartment. We don’t buy a lot of things because my son needs calm and order in our home (as do I but it’s a want) and we spend a lot of what would be ‘fun’ money on our oldest’s therapies and tutoring. It’s endless!
Big hugs to you in the long days, Rachel
Rachel, this is such a beautiful post. You are giving a voice to those of us moms who have children who are not neuro-typical. We, too, are striving to live more minimally (not always by choice). I have wondered about our pared down life and its impact on our other two children, but I think that learning to manage challenges and sacrifice for others and be compassionate are opportunities to develop empathy. And what better thing to give our children (and ourselves)?
Manuela, thank you for your friendship and advice this past year. You were the first parent I ever spoke with openly about my son’s problems. Your warm and easy way of talking about family life with a non-neurotypical child has been so helpful. And so true, living minimally is often not a choice with a non-neurotypical child. I think that is one of the reasons I have struggled to write here of late. Some of this minimalist lifestyle is no longer a choice- it’s the only way to keep our family functioning. Limited activities, extra time in our schedule (needed when one child struggles with executive function) and a calm easy home that has room for my son to do his pacing in circles, no longer a choice but a necessity.
You have a wonderful family and your kids really are learning so much about empathy and other’s needs. I see it in them and I admire the parents that have fostered it. Thank you! Rachel
Rachel – thank you for sharing. This community you have created supports you! I have missed your posts but am so grateful you have shared your latest journey in motherhood and minimalism. I’ll never forget finding you and ordering your ebook impending the birth of our first/only child back in 2010. You were a godsend and changed my life. Continue to live in the present and take each day as it comes. Celebrate the little victories! Always remember, you are doing right by your family!
Thank you Deanna 🙂
My girls don’t have diagnosed disabilities but both have their own versions of anxiety and so much of this struck home in such a big way. Thank you for being open and writing. It’s opened my eyes to a few things that need to happen differently in our home right now.
Leigh Anne
Oh Leigh Anne! We have anxiety in the mix too and it’s hard. Have to think ahead for all the triggers when planning any new outing. Big hugs to you – it’s not easy the kids or the parents. Take care of yourself friend, Rachel
I’ve been reading your blog for years and just wanted to support your honesty in this post. Best wishes for you and your son, and for everyone in your beautiful family. You have been inspiring me for a long time and that is even more true now.
Thank you Meg. 🙂
Great post. I have a few friends whose kids have been told they have developmental “issues.” At first they just hid away and I assumed they weren’t interested in a friendship. But once the secret was out, we all found ways to support one another . I’m so glad you’re sharing this part of your life . As always learn a lot.
Love you lady! Yes, you’ve always been an open nonjudgemental friend. Never feel like I have to censor myself with what’s really going on in my family.
Hi, I’ve got a 15 year old son on the autism spectrum, so I’m a little further down this road than you are. It’s so true, we have to keep things as simple as possible. Constantly being on the go is not possible with him or myself. We both have to have structure and down time. I’ll take him out during the summer one day a week. That’s all he can handle the crowds and noises. He wants to go but it causes a lot more meltdowns and trauma. I’ve also been paring down to being more and more minimalist. It helps keep me calmer so I can deal with him.
Marsha, thank you for commenting here. So true, we just can’t be on the go a lot (really, much at all). I am finding it easier to tell people that now that we have a diagnosis. Before it was challenging to explain to families with neurotypical children that the fun outing they invited us on would be very stressful for my son and thus the rest of our family. I feel more confident now in declining invitations or asking them to be adjusted if they want to include us. Good luck to you and your son 🙂
A fantastic post, of which I can really relate to. Thankyou for sharing your thoughts and insight.
Thanks Bel 🙂
Rachel – firstly I read every word of this post, No skim reading while heading out the door which is getting so much more common with me these days as life becomes more hectic.
“everyone faces challenges, some we see, some we don’t” – this line resonated with me. As someone who also lives partially in the virtual world, as well as in real life, it can be hard to strike a balance with what you share and what you don’t – for a multitude of reasons. Blogging can be an escape from the realities of everyday life – but then as a blogger so much is shared about real-life – it’s hard to hit ‘publish’ sometimes (my last post never made it online, it sits in ‘drafts’).
I really wish you and yours the very best going forward – I cannot offer any specific words of wisdom as we’ve not been personally affected by childhood disability, By sharing you will find those who will be a great support to you – and you to them. That’s the beauty of a community like this. I have, however, experienced life-changing situations (who hasn’t?) – and as such have tremendous faith in that life only presents to us what we can firstly cope with, hopefully accept, grow from and ultimately embrace. Sending my love – Jo x
Thank you and so great to hear from you. I hope things are well in your neck of the woods. Hugs, Rachel
What a great and honest post. This is what blogs should be – real life, honest and posts that draw others who need like-minded people to speak up and let them know they’re not alone.
Such great advice about keeping life and surroundings to a minimum. I think we would all do better to live this way.
Blessings to you as you care for your family.
A big huge from Ireland. I have twin boys, non identical, both with disabilities and a Nero typical little girl in aspie speak. Its hard and we have embraced minimalism to calm our days and reduce our wants so the therapies etc that are needs can be paid for. I proudly watched yesterday as my kids put the tokens for the community fund at the shop in the slot for the local ASD family support group after reading all the info on the groups they could choose, and proudly declaring out loud that they have autism and so their token goes there. It has taken 4 years to get to thus point but they own their diagnosis now, age 9,and though it will still be hard going forward they are proud of themselves and not ashamed and for that I am a grateful mama. I had to learn to own their diagnosises too and knowing other mums has truly helped on that path. It is do hard some days but times change and hopefully the some days will become less days. Just remember to loom back and see how far you’ve all come once in a while with praise for everyone.
Hi Lisa, this was wonderful to read. I hope my son can own his diagnosis some day like your boys do. Right now he knows he is different but we haven’t gone as far to tell him what the names of his disabilities are.
So true that you have to get rid of your wants when your children’s needs take up the money and time. I’m so thankful we have the resources to get him help but it comes at cost to the rest of the families wants.
Big hugs right back to you, Rachel
Lots of love to you and your lovely family. You are a wonderful mother and an inspiration to many with your minimalist posts. This post will reach out to an even wider group of women who face daily challenges. xxx
Thank you 🙂
Big hugs to you Rachel, and thank you for sharing your story. I have also found the more we share what is really going on, the more support is available to us and the more likely we are to find our ‘people’. When my son was 2.5yrs he developed a serious gastrointestinal allergy to gluten that tended to have erm, explosive, symptoms(!) that resulted in a very sore little boy with blisters and cracked skin all over his bottom and 2 exhausted, hurting parents (trying to clean a small child up when one of you has to hold him down while he’s screaming his head off, just so you can clean him up and put a fresh nappy on is emotionally exhausting!). Thankfully he grew out of his allergy when he was around 5yrs old and now eats more adventurously (and with the least gastro symptoms!) of anyone in the house! What I regret about that time is that I didn’t tell anyone how bad it really was. Everyone had advice or an opinion (maybe it’s IBS or Giardia? You should just let him eat things on special occasions, he’ll learn to deal with the consequences…ugh!) and I think that put me off actually telling people what was really going on because I just didn’t want to deal with their ‘advice’ and opinions! But really, talking about it with people was the thing I should have done, I would have got more support if people had known how bad things had gotten, and I wouldn’t have felt so desperately alone. The only advice I would offer is to make sure you look after you. When we got through the rough years my son was happy, healthy and could eat anything, but I was the one having panic attacks, and had developed IBS and Fibromyalgia! Even if some days you just have no energy left for people, know that we are all thinking about you and sending you love as you navigate these challenge xx
Clare, I can really relate to not telling people because of the onslaught of well meaning but ignorant advice. When your child has an illness or isn’t neurotypical, a lot of conventional parenting wisdom just doesn’t work. We’ve tried a lot of the systems and methods other parents use and most simply do not work for our child. His brain operates quite differently than most so even simple tasks like getting dressed are very challenging for him to complete. It doesn’t matter if there is a reward or token or money dangled in front of him – he can’t hold the task in his mind long enough to complete it in one go.
Take care of yourself, Rachel
This is beautiful. Thank-you for your honesty; you’re doing a great job mama!
Thanks for writing this. We’re going through some similar things with our oldest, who’s six. I haven’t written about it on my blog either. I can really relate to the isolation & how much energy it all takes up.
Good to hear from you Lisa. Hopefully we can catch up at one of the family rides. Maybe L and H would get along? Friends and play dates are a real struggle for him.
Thank you so much for this post. I have a son with autism and this totally helps explain what drew me to minimalism. Good luck to you and yours.
Thank you. Our reasons for starting with minimalism were to make life easier (and pay off debt) but in the last 2-3 years our sons need have made minimalism a necessity in some areas. Wish you good luck in the long journey 🙂
Rachel, I don’t comment often but I’ve read your blog a long time and just wanted to say that you are such a great mom. I love how you’ve adapted minimalism to provide what your son most needs from you, and your parenting philosophy has helped me. I’ve consulted your minimalist parenting book many times over the past months as I just gave birth to our son after five years of infertility (and finally one successful IVF). Your book was the most grounded reminder that what our son needs most is us, and everything else is just window dressing. We are still in the new, sleepless hard times but we are starting to find our feet and you’re an inspiration to me. This was a brave post, thank you for writing it.
Stacey, first congratulations on the arrival of your baby! What a journey to get there – such courage and strength required to keep going. I’m thrilled to hear my book has been helpful. So true – parents and your support system are the most important things, the rest really is just window dressing. Sending you good sleep vibes (those first months are tough!). Cheers, Rachel
What a brave post and I hope that bravery will give you ever more peace. Your family sounds lovely- not sugar coating what is difficult- but there is clearly so much love. You are a great mom.
Thanks Deirdre. So nice to open up about this and find so much encouragement. Much appreciated.
God bless you and him. Great post, because real is real. I like your mind of minimalism.
Thank you for sharing!
Rachel, that was really well written.! I too have a child with several disabilities, I know first hand how a day with broken routine can go sideways! The domino effect of the melt down, everyone in the family reacting to it…..
I was given great advice from family Dr. Treat her as normally as possible until she proves she can’t do it. She’ll let you know when she’s had enough! We quickly found out she was/is game for anything, but her attention span is short so we adjusted her schedule not ours! She’s 38years old now, and loves EVERYTHING social! Lol for about an hour and then she removes herself ….
it does get better, it does get different, and life goes on! Enjoy the good days and reflect on the bad days! Keep things simple and organized, routine works wonders!
Thank you for sharing your story,
P.S. ask your mom about Jenny @ Birch Bay!
🙂 Thanks Jenny from Birch Bay. I’ve heard a lot of wonderful things about you!
Thank you, your courage to share is inspiring .
Thank you for sharing Rachel! Having a child who isn’t neurotypical definitely has played a huge role in my draw to a simple life. My oldest, 17 in a few months, has ASD, ADHD & Tourettes. Things got easier for him as he got older. Things got less hectic for me as he got older as well.
Thanks for sharing here, Amy. Wonderful to hear from a parent ahead of us on this journey.
YES! Excellent post, go mama! That is exactly what minimalism should be.
🙂
Thank you for sharing. As an Early Years teacher who teaches children with ASD, SPD, ADHD and other illnesses and complex issues, I see how hard it is for parents and how far we have to travel as a society to be more inclusive of children who are beautiful, whole people, but are square pegs in rather small round holes in mainstream schooling. I am actually just about to leave my teaching job to study special ed (and simplify my own life further, different story!) and try to be a small part of making the education system a more inclusive place. People need to talk about these issues and anyone touched by them needs to reach our to others and be heard.
Thank you for the work you do! We need more teachers – and people – that understand these unique kids. Square pegs in round holes is a good analogy. Thank you – Rachel
Thank you for this piece that maďe me cry and smile in recognition. As a mother of a child with autism, this really hit home for me. So there are more of us out thgere… once again thank you for dewciding to write this text! Sending you love.
Love and understanding back to you. My son is a slashie: autism/severe inattentive ADD/number of other challenges. Take care of yourself – Rachel
Thank you, Rachel, for your honesty, and for opening my eyes to a different aspect of simplicity/minimalism. x
🙂 Thanks L. Really enjoying your cataloguing of zero waste/low waste toiletries, makeup and household cleaners on Instagram. Your simple recipes are so encouraging.
Apple, Rachel, Another similar motive to “going minimalist” if not already, is seniors and mobility issues, arthritis, joint stiffness. Less clutter means less cleaning and open rooms with less dusting, etc. Cleaning and chores made easier. We are more minimalist since retirement than ever, we walk and bike around home for exercise. Husband career Army so we moved a lot in the ’60’s thru ’82, somewhat minimalist, but folks didn’t keep as much stuff as now. Any kind of health issue young or old, values do change for those who desire simplicity and more time for leisure.
A brave post. I have missed your blogging.
Thanks, Emily 🙂
Rachel, I can’t thank you enough for this post. Thank you for helping me reframe the struggles I have with the one of mine who is different. What you wrote about home being the one place he can get the patience and love he needs made me cry. That is what I’m doing for my daughter every day and there are so many days when it’s just trying to get through to the end only to look forward to the same struggles the next day. Having less choices for everything does seem to help–hence the benefits of minimalism. Thank you for sharing what I know is a very hard thing to admit to anyone, let alone the blogosphere!
Big hugs to you, Sarah. It is so hard. Occasionally I can feel the ‘it’s so hard but he’s taught us all so much’ feeling but, honestly, it’s not often. We are in a really challenging phase right now and we have to hunker down and draw closer together to manage it. Meeting a few parents and kids that are on the same path, some ahead of me in years and some just starting on it, has helped so much. Stay strong! You’re doing the good hard work for your daughter – she’s lucky to have you. Rachel