autism · Down syndrome

10 things I wish I would have done as a special needs parent from the beginning.

WheParenting children with special needsn Casey was first diagnosed with autism, I set out to be the perfect special needs mom. I worked really hard to know all of the information, read all of the books, all while trying to do the regular mom stuff- cleaning, laundry, meals, etc. I burnt out hard. I flung myself into a depression that wasn’t easy to dig out of. But when I finally got out of it what did I do? The same thing. This cycle repeated itself until I found myself in a therapist’s office dealing with chronic pain and debilitating anxiety and depression. I had to change.  Looking back, I see now what I was doing that wasn’t working, and found things that help.  I was fortunate to understand a lot of these things by the time Abby was born, but there’s still a million more things I could do to save my sanity. These are the first ten that came to me.

1.  Learn how to say ‘no’.

There are going to be people that suck the life out of you. You have enough on your plate, if these aren’t reciprocal friendships or endeavors, say ‘no’ whenever you genuinely don’t want to do something or simply can’t.

2.  Cut out all of the fluff.

Before Casey was diagnosed, I was seriously concerned about not having enough cute nicknacks in my house. It seems SO crazy to me now.  This has been a lesson to me on two fronts: 1. Cut out the literal fluff- anything ‘fluffy’ (nicknacks)  in your house that isn’t necessary. Or, at least, don’t buy any more. It’s one more thing to clean. It’s one more thing to get broken.  I have a veritable graveyard of Willowtree Angels that I HAD to have. Unless it’s something you do as a hobby, (see below) this sort of thing just clutters up your space and your brain. Which leads me to the second lesson: Cut out the figurative fluff. We live in a Pinterest world where there’s always some way to take an ordinary event and make it extra stressful. Children’s birthday parties are less party now and more extravagant events. Your kid isn’t going to remember the fluff, at least mine don’t. They will see pictures of them blowing out candles on ANY cake- store bought or one with baked in tears.

3. You’ll lose friends. Good riddance.

Someone actually did tell me that I’d lose friends after Casey was diagnosed. I didn’t believe her. I wish I had. And I wish I could have employed the second part of this point too. Disability is a fantastic friendship sifter. You’ll find out who your true friends are because they’ll stick around. They won’t expect you to be fun all of the time. They’ll listen. They’ll come over and sit with your kids so you can get a nap. Those who don’t stick around you are better off without. It sucks to learn that friendships aren’t what you thought they were; but it’s sure nice to know before you devote any of your precious time to someone who isn’t worth it.

4.  Don’t overload on disability-specific information.

We are are fortunate to live in a time where information is readily available at our fingertips. After each of my kids were diagnosed, I binged on autism and Down syndrome information. I only read books, blogs, websites and forums about the two. The problem with this is that a lot of the information out there tends to point out the negative aspects of disability. There are things you can’t learn from books- you have to live it.  I finally put down my Down syndrome books when Abby was a couple of months old and just enjoyed my baby.  I’m not saying to not do your homework, just make sure it’s not ALL your doing. Read funny stuff. Read stupid crap. Mix it up from time to time.

5. Listen to those who have gone before you.

Like I said, there is only so much you can learn from books. Life experience is the best teacher. Parents of older children or adults with disabilities know more than you do. They just do. Will they have done things or have the same perspective on your kids as you do? Maybe not. Listen regardless. I’ve learned more from my friends within the special needs community than I have from any book.

6. Don’t stop being yourself.

4bdf329af59c11e2be0322000a9f38f1_7This is a lesson for any parent, but especially for parents with children with special needs. Don’t try to fit yourself into the mold of what you think a special need parent should be. I used to think that I had to be brave and strong and happy all of the time. I had to convey to the world how supremely grateful I was for the challenges we had. Bullcrap. That is a mold I cannot and will not force myself into any longer.   I like my music loud, I swear, I complain and I make a thousand mistakes a day.  It’s not that I’ve stopped trying to be better, no, I just want to be a better version of ME.

7. Find a way to relieve stress.

I should say a “healthy” way to relieve stress. I’ve heard that heroin is a great stress reliever…but you know, it’s heroin.  My therapist back when I was having chronic pain forced me to find something that wasn’t autism, parenting, or housekeeping related to do that I enjoyed. He even went as far as forcing me to show him what I had learned to do. I craft. I make crappy jewelry and cards. I love it though. I have friends that exercise, some that knit and others that mercilessly mock me on Facebook. All of these things give their brains a break from the daily battles and give them something to do that is rewarding to them.

8. Take any break you can get.

I used to put my kids to bed and then think I had to get to work on my house, blog, reading, etc. I don’t do that anymore unless I want to. I use the time to relax, catch up with friends, or do something fun. If you find yourself child free, remind yourself to use that time to recharge. You might have to get a babysitter to have child free time. DO IT. I get how hard it is to find a good babysitter. I have an autistic son and a daughter who is medically complicated. It’s  necessary.  It’s expensive. It’s necessary. Find a way in your budget to have a night free at least every two weeks. If it means giving up eating out, data plans, etc, DO IT. It’s soooo important to be able to get a break. It’s vital to your relationship with your spouse or significant other, and it’s vital to your mental health. Even if you don’t go on a planned date, get a freaking babysitter so you can nap. I once paid a babysitter to watch my four kids so I could sleep in my car. I kid you not.

9. Medicate

You’re going to deal with more stress than the average person. If you’ve tried everything else and just can’t keep your head above water, get some help. You might just need someone to talk to. Do it. I’ve found that just talking to someone isn’t enough. I needed help to defray the daily emotional cost of having two kids with disabilities. On my best days, I still need help. Find a doctor that will work with you to find the best medication. I’ve just spent the last six months trying to find a good medicine to help with my new fun anxiety problems.  I’ve finally found one that gets me back to normal, and I use therapy to help me stay there. There is nothing wrong with needing medicine or therapy. Nothing.

10.  Enjoy it.

cd1e5beeed9811e2b65722000a9e00be_7You are your kids’ parent first. Advocate, teacher, and therapist are important roles, but they aren’t what you ARE. Enjoy it. As I’ve typed this out, Abby crawled on the edge of the couch by me and then dove head first into my lap. She giggled as she wriggled herself around so her feet were on my face. I ADORE her. I love my time with her when we’re not doing anything else but existing in our roles as mother and daughter. I love having Casey wake me up as he tries to stealthily crawl into my room to sneak into the spot between me and his dad. I love what all of my kids teach me, and though I complain a lot about the minutia of motherhood, I absolutely love being my kids’ mother.

41 thoughts on “10 things I wish I would have done as a special needs parent from the beginning.

  1. Thank you for this. My boys are in their 20s now but the same advice still holds true. Sadly, you still find out who your friends really are once they meet your children. The good ones stick around through it all. My best friend is actually 20 years younger than me but THE best friend anyone could ever ask for!
    I cannot also not stress enough, the importance of medication if you need it! Sure, alternative therapies are wonderful but sometimes you need the meds. It’s not shameful and I am so tired of people telling others that it is something to be ashamed of! The stigma is even worse for parents who need anti-depressants and Moms especially, tend to avoid it for fear of anyone thinking they cannot handle being a mother. Fear is a powerful motivator and it can stop a person from seeking help when they desperately need it. I’ve been there and it’s not pretty when the ambulance and cops show up at your door.
    Anyway, I’m rambling. Awesome list and I especially love your advice about enjoying it. We oftentimes get wrapped up in life and forget about the beautiful kids we have in our presence. Sure they get on our nerves but they are funny and loveable and deserve to have parents who want to be part of their lives.
    Thank you for this.

  2. Oh, damn, I wish I had known these things 10 years ago. It has taken a lot of time to learn them, and I’m still practicing these principles. They’re gold! You are so right, Lexi! So, so right.

  3. Great list – I too got bogged down in the “expert” books and all that did was make me feel completely overwhelmed and I can do that to myself w/o books :)For us date night even if it’s just a movie & popcorn w/o kids at the house is an absolute must! For now, I’ve decided we’re going to take it a day at a time and do our best to enjoy the ride!

  4. “Don’t stop being yourself” is my favorite. When we found out about my son’s diagnosis, I was told by MANY other special needs parents that I would quickly learn how to be a “bitch” to get my son what he needed. I would need to fight with doctors, teachers, people we met out in public– it really terrified me. I didn’t want to become an unapproachable scary lady. Turns out I didn’t have too. I think it’s important to live this new normal life as ourselves. No need to fake anything. Love your posts!

  5. Great post:) these even apply to mothers without children with disabilities.. Your doing a great job as a mother, and i am glad to have came across this blog! I check everyday to see whats new. In many ways just as a mother i can understand the need to have everything in order, but many learn that just isn’t possible. You can only pick two things in life : Sanity, a clean house, or your kids it just ins’t possible to have all three. I constantly have to tell myself that its okay that everything isn’t sparkling clean and that my laundry is about 2 weeks behind. I work full time and will soon be going back to school its really hard to juggle it all, and i can certainly imagine how hard it is for you!

    Keep up the awesomness:)

  6. I remember when we started down this path with Johnny, I didn’t read any books, and foolishly tried to “learn” it all on my own. Foolishly dealing with people in my life who suggested “better parenting”. It took the birth and death of Madeline to form a network of “special needs parents.” My e-mail to you regarding Autism Shines was my first step. I wish I had done it long ago. Johnny has been a wonderful friend sifter as well. I use to beat myself up about taking medication but I have learned my limits and I hit them looonnnng ago. Johnny is a full-time job but comes with many benefits. He just makes me laugh, and then make me pull my hair out and then laugh and then cry when stood at Madeline’s grave and spontaneously bowed his head and prayed. Then announced she was in heaven surfing. I am rambling…Love this post…You are amazing in all the ways you put yourself out there, so that so many of us can think we are as normal as can be.

  7. I *know* this in my head, but my sleep-deprived conscience so often blocks it from my memory. Thank you for this REALLY timely reminder. I heart you.

  8. The timing of this is just too perfect. Thanks you so much for your constant honesty. Especially the part about feeling like you need to be this super mom all the time. I’m done with it too! Three cheers for being myself!

  9. Thank you! I throughly enjoyed this post. You speak in a way that makes me feel like a best friend has given me this advice. And it’s a constant battle to keep a hold of this advice and apply it. I think Ill print it out and post it in the kitchen. I have just about turned myself inside out trying to be the all time amazingly well educated Special needs Mum. And as for cluttered homes seeking Pinterest Perfection and Kids Birthday Parties of the calibre of an Event Coordinator…. yup that’s me. I have recently been selling some of my unfinished projects that have been burdening me and making our Budget seem weak and useless. Goodbye Chandeliers I have own for years… that I have not finished restoring……. And it does actually feel good. Best advice of all. Just hang with my kids. Im figuring out how to cook meals in advance so I am not in the kitchen all the time. Im trying to stop being so anxious about my life so I can BE ME for my kids and be relaxed.Bless ya. Thanks for cutting through the crap !!! Melanie

  10. Great post! I wish I hadn’t been so obsessed with learning when my son was first diagnosed too. It stressed me out and I was in manic mode trying to squeeze in all his therapies since every book said the first 3 years are the most important. I felt like I had this ticking time bomb that was going to go off when he turned 3. Now I know better! The thing about friends didn’t happen to me, sadly it did with family. And still I say good riddance, we don’t need your negativity.

  11. All wise words to live by! The friendship one was hard at first until I realized I was less stressed. Less stressed about making excuses as to why “no, I don’t want to run errands with . . . you because Ellie will throw a screeching banshee fit”. Medication and therapy and hobby. I agree. Depression and anxiety are nothing to joke around about. I take my meds, I go to therapy, and I sew/read. It was refreshing to see you list that in plain black and white . Anyway, Lexi, as usual, another brilliant blog post full of great information.

  12. For the last fifty two years I have been dealing with all the things you have mentioned. Great advice, don’t try to be everything to everyone, just know that there is always someone who “knows how things should be done, but doesn’t have the hands on 24-7-365 experience that you have” you love your child for who he/she is and the love that you receive. You gain true friends and loose your fair weather friends.

    I appreciate all the strides that have been made in the medical community, the diagnosis and treatment of our Special Needs Children. I am thankful that we have a choice for them that was not possible fifty years ago!

  13. Love this. As a mom of a five year old with Down Syndrome I find myself thinking the same things….and actually doing them. I am what I am and I am most definitely not a perfect special needs mom!

  14. I discovered your post and blog via a FB share from Jessi at Life with Jack and I just wanted to say a huge thanks. I am much less far down the road. My youngest child, I call him Boo on my blog, was born at 29 weeks 16 months ago and was unlucky to get meningitis on day 3. He is developmentally delayed, has cerebral palsy and has had seizures. I have fallen into so many of the traps you mention and struggle with anxiety and depression at times. But I do also enjoy my kids so much and feel so proud of them. Thanks for being one of those more experienced people I can listen to.

  15. Great words to follow! My son is 3. (Phelan Mcdermid Syndrom 900 worldwide) and he is non verbal,non ambulatory, blind, deaf and has all kinds of health issues. But he has a smile a mile long Aand the most contagious laugh. AND this is exactly the kind of post I needed to hear. I even teared up on the part that you said we don’t have to be strong all the time. I feel like I am not allowed to cry sometimes. I feel validated and really inspired to add this list to my daily life. THANKS so much

  16. What a beautiful story. You are an inspiration not just with parents with special needs kids but everyone. I wish you the best of luck and your daughter is absolutely beautiful.

  17. I agree with all but 1 of the 10.

    No need to put pills in your body. Bad stuff.

    Get more physical activity, drop sugars, caffeine and processes foods. You’ll sleep like a baby. 🙂

  18. Great list. I think it’s hard to do some of that cutting away of people we thought were friends.. and the fluff and expectations. Sometimes I still want that Martha Stewart spread on the table, but most times I just want to be able to *see* my dining room table without any medical/school paperwork on it.

    (and I will respectfully disagree with Mr. Horn above about taking medication. Whatever it takes for a person to be healthy for themselves, for their spouse, and their kids, I believe is the right thing to do. No shame.)

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  21. Oh my goodness, your daughter is soooooooo cute. I loved reading your writing. I have 4 kids, two with special needs, one has down syndrome. I have been through many cycles too, but love being mommy! Thank you for sharing, you are inspiring and strong! Rock on momma!

  22. OMG I so needed to see this!!!! I have been bugging out since my child was diagnosed with autism sepectrum disorder. I have been over doing everything. My Husband has been my rock and I have a lot of support, but sometimes I get caught up in trying to be a super mom that I forget about myself. I’m so glad I read this it has truly help me to see things a little different!!!! Thank you Thank you!!!!

  23. Love what you wrote from the heart. I am my daughter’s Dad & Advocate- Her Dadvocate. My wife is the cornerstone that keeps our family of 6 focused on the gifts in our life, including 24 year old Holly who is nonverbal, developmentally delayed, with very bad seizures. As a Dadvocate, I hope you Dads are pulling your share of the load as a parent, and I’m not just talking about being a bread winner either. Everyone should read the subtle wisdom of the article; the good, the bad, and the priceless. The worst thing I can think of is NOT being there when a special moment happens in any of my kid’s lives. For us, it was when,Holly started facilitated typing with a 22 year old girl who knew nothing about people with Special Needs, but fell in love with Holly and chose to spend her free time with her. The result? A miracle! We have just published Holly’s book; “Just because I can’t talk, doesn’t mean I don’t have anything to say” and a CD she co-wrote titled, “God a Will Sing You Home”….all after 24 years of silence and being told she would never have a voice. I am so proud of Holly, my wife Eileen, our 3 other super supportive kids, and Ashley, the Holly Whisperer. I must also honor you parents who do not become invisible; who fight the good fights with more than anger and disappointment. To Mommies and Dadvocates; super siblings and family; underpaid special education teachers and Paras making minimum wage, but giving maximum love and effort. This generation of kids will be the first to be truly inclusive; the “normal” kids and the “special” kids are finally just the kids in the hall. Our kids get it. My hope and prayer is that we parents, we adults will get it too.

  24. Thank you! Thank you for this post! I have a 3 year old with multiple disablities and we just found out the baby girl were expecting has some similar medical issues. As I struggle to prepare to be a mom to 2 complex kids, your words reminded me of what matters most.

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