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20 Things Every Parent of Kids with Special Needs Should Hear

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1) You are not alone.

There may not be anyone else with the same constellation of symptoms as your child but there are people with similar challenges.  Find those people.  I have never met anyone with all of these same challenges as my kid but I have a strong network within each separate diagnosis.  We have made wonderful friends and have found — and I hope provided — a great deal of support within each of these.  I just have to pop onto one of my Facebook groups and I’m immediately reminded, I’m not alone.

2) You too deserve to be cared for.

We are placed in a position of caring for others nearly constantly. However, you still need and deserve to be cared for.  If that entails asking friends or family to bring a meal by every now and then, or going for a pedicure, or a date night, or whatever else you enjoy doing.  Whatever makes you feel special and taken care of, take the time to enjoy it, you are worth it!

3) You aren’t perfect–and that’s ok!

No one is perfect.  We all make mistakes.  We can wallow in our goof-ups or move on! Try to shift your thinking, maybe there was a good reason you missed that appointment, that   you were sure was on Tuesday but apparently was on Monday.  Maybe your kiddo had a tough day at school and just needed the night off.  Who knows. But beating yourself up isn’t going to change the situation, so try to move on.

4) You are a super hero. 

You may not leap buildings in a single bound or run faster than a speeding bullet but you are a super hero none the less. Everyday, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine.  You hold hysterical children during horrendous medical procedures. You deal with tantrums and melt downs. And most often manage not to have a tantrum or melt down yourself. You encourage your child to do things doctors told you they would never do but you never gave up hope. You are a therapist, nurse, doctor, friend and confidante.  You are no regular parent.

5) Therapy is play.

Having  sat in on several therapy sessions, I have been frustrated by what I thought was premature discharge from therapy on more than one occasion.  Since then, I have grown, I have learned and I have come to understand.  For children, therapy is play and play is therapy.  What I mean is that the best therapists find ways to make my son engage in challenging activities that he otherwise would have balked at, by making it a game that he wanted to play.  We took a page from their book and did the same at home.

6) Play is therapy.

Yes this is different from number five. After discharge from therapy, we sought extra curricular activities for my son that would offer therapeutic benefits.  He played sled hockey, runs on a track team, learned to shoot archery and takes swim lessons.  All of this is therapy. He’s learning, having fun and getting stronger.  Win, Win and Win!

7) Make time to enjoy your kids

We super parents tend to be fairly busy and often over scheduled.  However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly and just enjoy your kids.  Read to them, snuggle with them, engage with them with what’s important in their worlds.  Make memories outside of  hospital walls.

8) You will be obligated to make heart wrenching decisions.

You will have to make painful decisions that hurt your heart and leave you questioning everything you thought you knew or understood.  Know that you are doing your best, remember number three.  I am guilty of agonizing over these types of decisions, they can become really over whelming to me.  Talk about your conundrum with others who get it and trust yourself to make the best decision.  Make it move on and once it’s made don’t rethink it.  Easier said than done, but worth a try!

9) You won’t always get it right.

Many of the choices you are forced to make have no right answer, just the lesser of the hard and painful wrong choices.  You will do your best but you won’t always get it right no matter how many sleepless nights you spend agonizing over how to handle a situation.

10) Forgive yourself.

Yes, you will screw things up sometimes despite the very best of intentions.  No amount of torturing yourself will make you feel better, nor will it help you to make better choices. Remember many of the toughest decisions have no right answer.

SEE ALSO: 7 Confessions of a Special Needs Mom

11) Being a parent is hard. Being a parent to a child with extra needs is extra hard.

It can also be extra rewarding. Make us extra passionate. And will almost always make life extra interesting.  With the challenges come the rewards. Sometimes you have to search your heart for the rewards but they are there if you look for them.

12) Parenting a child with extra needs is like a marathon.

For those folks who are trying to win a marathon, there are no breaks. If you want to stay in the race, you eat, drink and even pee while running. But our marathon will go on for the foreseeable future and beyond.  So remember, you don’t need to win, just make it to the end. The guy who comes in last place in the marathon, he took breaks, he stood and drank some water, grabbed a quick bite and used the porta-john for his business, then got back on the road.  Give yourself those moments–however brief–that are for yourself. Goodness, you might even get to pee in peace every now and then.

13) Don’t lose yourself.

Don’t let being the parent of a special needs child create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity.  But it shouldn’t be all of our identity.  When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost.  Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself.

14) Keep your sense of humor.

Certain things get under my skin, we all have our buzz issues, one of mine is people first language. But if you’re not careful, you can become overly sensitive to so many things that people start to avoid your company.  Many colloquialisms like “I almost had a stroke”, or “I nearly had a heart attack” are disconcerting to parents whose children have in fact had a heart attack or a stroke.  However try to remember that people are not making these comments to offend or upset you.

15) Celebrate the little things!

Brag about those accomplishments that might seem small to others but are huge for our kids! Our kids develop on their own clock, they learn many skills late and some they never master.  A wiggled toe that couldn’t wiggle before, a word, a sentence, a smile, a hug, whatever that milestone may be, share it with those who love you and your child.

16)  Don’t let typical parents get you down.

I know how hard it is to hear from parents that their child six months younger than yours is walking and yours isn’t.   Or dealing with the well meaning stranger who asks why your 2-year-old is scooting around on their butt rather than being up on their feet.  Try to remember that these people lack the context that we are constantly embedded in.  Explain, teach, be patient, raise awareness amongst those who just don’t get it.  And remember, typical parents deserve the right to brag too and their pride at their child’s accomplishments is not meant as a knock to your amazing kiddo.

17) Don’t compare.

This is another challenging one folks, but worth the work.  All kids are different, typical, or with extra challenges and they will grow and develop at their own pace.  If a developmental milestone isn’t met as you think it should be, certainly talk to your child’s doctor.  Comparing, siblings, cousins, kids in the daycare class, or even comparing kids within the same disability type rarely serves to make you feel better.  Your child is unique, and will have their own individual strengths and challenges.

18) You don’t have to be “THAT” parent.

You know the one who clearly spent 10 hours creating the amazing snack shaped like an animal with licorice whiskers.  The one who sends adorable treat bags for every holiday.  The one who finds the coolest gifts for the teachers every year.  And whose child is always dressed in the cutest outfits that somehow never get dirty. If that’s the mom you are led to be, more power to you! However, I have found that there are always enough of those mom’s in my kid’s classes to keep them in cute snacks and treat bags.  Since I have bigger fish to fry, I let them have all the glory!

19) Make time for your marriage.

Marriage is hard work, period.  Parenting is hard work, period.  Parenting a child with special needs, is especially hard work, period! For those of you who are married or in a relationship, make time for that relationship away from your children.

SEE ALSO: 15 Things To Never Say To A Special Needs Parent

20) Trust your instincts.

You know your children best.  Doctors, teachers, therapists are all fantastic resources but if you don’t feel like you’re being heard, or your child’s needs are being met, it’s very reasonable to get a second opinion.  Don’t be afraid to fight for your child and their needs.  While the professionals are experts in their areas, you are the expert on your child.

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About Dr. Darla Clayton

Answering to Mom, Mama and Mommy, Dr. Darla is a Coach and psychologist as well. She earned a doctorate in clinical psychology from Indiana University of Pennsylvania. She is a wife and a mother to two fantastic children, a 9-year-old son who has cerebral palsy and a 5-year-old daughter. Inspired by her sons success competing in adaptive sports, and concerned by the lack of sport options available to him, she founded Strong as Steel Adaptive Sports in 2011. The team provides sport specific training and opportunities for children ages 5 to 21 with physical disabilities and visual impairments.


33 Responses

  1. avatar Jane Hash says:

    This is great! I wish my Mom had been provided advice/support like this when she was raising me.

  2. avatar Sherie Ockers says:

    Parents can also join a group FB called Validations-For parents of special needs children

  3. avatar alli says:

    We know these things already but it’s great to read them as a confirmation!

  4. avatar Miriam says:

    LOVE this! As a mom with 3 kiddos, 1 of which has special needs, I agree that these are some great tips! Thanks!!!

  5. avatar danielle says:

    I love free “couch” sessions! Thank you…I NEEDED this today!

    …danielle

  6. Thank you from the Bottom of my heart 1st for this and 2nd for being available on Facebook where I can learn and understand my Eldest daughter who gave me my 1st Granddaughter and she is a Special needs child and my Angel with a Trisomy chromosome Disorder which is rare and Unique. She is my daughters 1st and only child at this point and your website and lead me to understand my daughters needs, disappointments, sometimes anger and lonliness. Thank you from a Very Proud Grandmother.

  7. Thank you all so much! I’m glad that you enjoyed the article. I know as a mom of a child with a disability, I need to be reminded of these things too. We are generally an amazing, hard working, spirited, passionate group of parents! Sometimes it’s nice to be validated for that!

  8. What a great article. I posted it on my Facebook so more people will see it. These are all valid points that so many of us forget. Thanks for reminding us.

  9. [...] SEE ALSO: 20 Things Every Parent of a Child with Special Needs Should Hear [...]

  10. [...] More From This Author: 20 Things Every Parent of Kids with Special Needs Should Hear [...]

  11. [...] Related: 20 Things Every Parent of Kids with Special Needs Should Hear [...]

  12. avatar Cheryl says:

    Some parents still have to deal with this even when their child grows up and is considered an adult. It is not easy at times to still be a parent. Even though the role may have changed. Prayer helps not only for your self but your grown child also.

  13. [...] See Also: 20 Things Every Parent of Kids with Special Needs Should Hear [...]

  14. [...] explains the whys and hows behind each phrase in her Mobility Resource blog post, 20 Things Every Parent of Kids with Special Needs Should Hear. The website features many resources for those with mobility issues, so check it [...]

  15. As a mom to 3 special needs kids ALL of these are oh so very true, but most importantly find a good support group in your area. This is what has helped me the most. Having others who understand what your going through, a shoulder to cry on, ear to listen to you venting when you have bad days & especially an ear to hear you brag of the good days & ALL of the lil milestones that other ppl take for granted.

    • Wonderful Denise, so glad you have found a local support group! That’s fantastic. For those who don’t have a local group in their area or just don’t have time, or childcare to attend such a group, online support groups are another great option. Either way, finding support in one form or another is really important! Thanks for sharing.

  16. avatar Bonnie Smith says:

    Keep your faith in God and pray, pray for his guidence, love, compassion. Stay strong. And remember—- GOD IS GOOD…..

  17. avatar Jennifer says:

    I am a parent of two special needs children and they have inspired me to create a non profit organization Extraordinary Child. After five and a half years I finally opened the doors of a play space for children with special needs and their families in Smithfield, RI.this past June. Could you please share for anyone in the RI area? “Like” our http://www.facebook.com/ExtraordinaryChild page for more information and please share.

  18. avatar Tammy says:

    It is easy to forget these things as a parent. It is hard to get others (family) to understand the choices we make let alone support us in them.

    This article says all the things I need and want to hear… Thank you.

  19. avatar George williams says:

    Dear dr clayton

    I admire your attitude and philosophy in developmental disability.

    Best wishes

    George L Williams
    Developmental paediatrician
    Sydney
    Australia

  20. [...] See Also: 20 Things Every Parent of Kids with Special Needs Should Hear [...]

  21. [...] 20 Things Every Special Needs Parent Should Hear [...]

  22. [...] 20 Things Every Parent of Kids with Special Needs Should Hear [...]

  23. avatar Foogirl says:

    I’ll add nr 21. “You’re doing a great job” On my worst days I doubt I am getting anything right. On my best days I think I’m doing the best I can for our wee girl. On any day I love to hear friends, family, or even complete strangers just acknowledge I’m doing a great job.

  24. This is fabulous encouragement for those of us with special needs kids! Thanks for lifting us up with your words.

    I’d like to offer this article as an adjunct:

    15 Ways Families with Special Needs Can Have a GREAT 2014

    http://sharingmom.com/15-ways-autism-families-can-have-a-better-2014/

    Have a great year! :)

  25. avatar Glenn says:

    I totally agree with all these 20 points. However, I would like to emphasise that these same children grow up to be teenagers, young people, adults and then older people. They still have these special needs, however, for some reason, society doesn’t seem to put much emphasis on special needs when you get older! Just a thought, this has been my experience.

  26. avatar Kathi says:

    these same things apply if you are caring for a person with severe dementia or Alzheimers. I’ve been there. Blessing o you all.

  27. [...] 20 Things Every Parent of Kids with Special Needs Should Hear [...]

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