Are you a parent to a child or children with special needs?
If so, I have a message for you today.
I GIVE YOU PERMISSION.
I give you permission to be tired.
I give you permission to cancel a therapy session.
I give you permission to feel weak.
When it comes to your child with special needs, I give you permission to allow a little grief to co-exist with other emotions like love and joy.
Why we need permission
Special needs parents, especially those of us who are people of faith, seem to make silent oaths for the sake of our precious children not to complain. We quietly resolve to make the world a better place for our kids, a place where they fit. A place where we fit.
And that’s right. If we don’t promote our children, who will?
But too often parents assume they can’t share struggles. No, struggles are bad, because people may think we don’t love our children. If we complain, people may look at our kids and only see disability, instead of the million other wonderful things that make them who they are. So we carry on, stuff down the difficult parts of parenting kids with special needs, and attempt to be what others assume are the best parents for our kids.
Friends. This is bad.
What happened to me when I didn’t think I had permission
I speak from experience. I parent four daughters, two of whom have Down syndrome, and one of whom was adopted from Ukraine in 2009.
After years of therapy, doctor visits, scary brain surgeries, hours of purposeful play, and the toil of bonding with my adoptive daughter, I hit bottom. For too long, I kept my struggles and fears regarding my children with special needs to myself.
And you know what?
I fell into a pit of depression. At one point, I didn’t even think Jesus could rescue me.
My life wasn’t working by just forging on, not taking care of myself, and not vocalizing “Hey, I love my children but this is really, really hard today.”
Giving permission
Some of the best ways I love my family and myself are by verbalizing my struggles and asking for help.
So, today, I give you permission.
If you are struggling with your child who has special needs, I give you permission to say it outloud.
I give you permission to ask for help.
I give you permission to realize and own the fact that Jesus is with you in your pain. He knows how much you love and cherish your child, and he also knows that this path can be difficult.
When I open up about my struggles something amazing happens.
I cry “uncle,” and God whispers “peace.” “Gillian, what took you so long to give this to me?”
I call for help, and Jesus stands up on my behalf. “I’m here. I’m helping.”
I confess weakness, and He claims strength. “Oh, child, finally, you are starting to get it.”
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9
You know what? My vulnerability hasn’t caused my family to question my love for them and my tears haven’t resulted in judgement.
Asking for help and sharing my struggles have brought a deep sigh of relief, a hope for the future, and the validation I crave.
I’m a special needs mom. I love my children but sometimes it is really, really hard.
Gillian its 1 am south African time and for some reason I couldn’t sleep. I came across this post on Facebook. Everything happens for a reason. I am a mum to 2 beautiful boys. My eldest aged 3 has spastic cp and is quadriplegic. I am a mum that just refuses to show her feelings. I always tend to do exactly as u talk about in your post. I always say to myself if I break then who will be there for my boy. I’ve really been struggling emotionally this past 2 months. I feel physically and mentally exhausted and sometimes just feel like giving up. To even write this down and admit it is hard for me but Gillian to read that hey I’m not alone in all of this is encouraging. I find myself questioning god a lot n yet I know his miraculous n healing ways. He has always been my comforter n I could cry my heart out to god but I find it so hard to talk to him lately. A mum who has gone through this will understand my plight. I am scared that eventually I will have a break down n that is something I can’t afford to happen. Please keep me in your prayers n thank you for your posts. I feel encouraged n inspired by them.
Thank you for your insight. As a father of a special needs child (adopted at 3 months old, now 14), this resonates. My wife struggles more with “giving herself permission” than I do, but it *is* hard nonetheless. I pray for her regularly, that she would come to a point where she could give herself permission to honestly open up with her thoughts and emotions in caring for our daughter. Thank you for the words.
Thank you for your post. Thank you for your encouragement.
Very therapeutic and affirming for me. Thank you for being vulnerable so others can heal. God bless you richly and may you continue to help others through your struggles and triumphs.
This is something I really needed to see. We have a blended family of 3 kids on the autism spectrum.. 2 with aspergers and severe adhd (my stepkids) and 1 with autism/mild MR/bipolar (my bio son). 2 boys and a girl, all 3 are 11 1/2, 11, and 9. We get realllllllly tired and broken down under the weight at times. Praise God He’s there for us at all times, and draws us to Him at times using the kids’ special neds.
Thank you!! Although my load is lot lighter now that my daughter is older, it is still hard. It was nice to read this post. 🙂
Wonderful piece. I wish there had been something like this when I was going through struggles of kids with special needs. I have a son who has learning disabilites and when he was young things in schools were much different. I also have a gifted child, those kids have special needs as well, you just never hear about them.
I am glad this is here now for my daughter to see. She has 4 children, all with some sort of special need. She gets tired, and frustrated, and knows she can talk to me, but it is nice to see peers have the same issues.
These are important words. It can be hard. We don’t want people to view our child with special needs as *that* much work. We fight so hard for inclusion, our kids can’t be that different, right? Especially to those that really care, but can’t comprehend a day in the life. I will tell, my daughter who has Down syndrome is cake, wonderful, and needs to be supported strongly to grow and learn. I can say I am so thankful that I was brought to this world of incredible people thanks to her, and will do my best to support her, and try not to kick myself so hard when I slack.
I do need to comment on one brief line. You say “especially those of those of us who are people of faith”. I know incredibly passionate parents and caregivers, and to say something like that just seems to discount their passion…if only a tad. My spirituality is mine and personal. My passion, advocacy, admiration and intense love I never knew could happen for my daughter is real, and no less than anyone else. I feel blessed and fortunate to be in this community.
That’s all. Beautiful piece.
Gail, thank you for pointing this out. I agree with you, and will watch my wording in the future. Hugs to you!
I have had the opposite experience of telling my tale to and sharing my struggles with others who have “neurotypical” children, and finding that their inability to respond was very difficult. So I have kept a lot more things to myself, but have been blessed with a group of like-minded moms where I can always safely share what is so close to my heart. Sometimes it helps to just scope out your “audience” a little bit before letting it “all hang out.” 🙂 But thank you for your words today, Gillian, they were a blessing to me today!
Gillian, I just want to say thank you; the courage and heart that went into this post just shine through. Brava!
I saw this post, and I’m so happy I took the time to read. The words you wrote seemed to speak exactly what I needed to hear today. I’m very tired today..from so many things, and it was just nice to read the words that sometimes we need to just give ourselves permission to ask for help. That is something I forget sometimes. And to know that Jesus is right there every step of the way..that’s what has gotten me through this far, and sometimes i just need a reminder. So thank you, because today was one of those days.
This is great. Besides my 13 yr old autistic son, I have the added situation of a totally disabled husband, 8 yr old home schooled twins, and have just recently been diagnosed as disabled as well. My whole extended family is half-way across the state, which is fine because most of them didn’t think there was anything wrong with my son except he needed “a good whippin'” and nothing wrong with my husband except he was lazy. (He’s in end-stage renal disease).
So the next question for me is, from WHO can I ask for help?
Thank you so much for sharing. It’s refreshing to hear that we don’t have to feel “perfect” all the time as parents. Personally, I think of myself as a “Claire” from Modern Family. LOL. 🙂
Barbara, I love Claire! Thanks for commenting!
Playing catch-up and so, so glad I caught up with this! Thanks and love!
Thanks Ann!
Thanks so much for this most encouraging post today, Gillian! My 20-year-old daughter has Down syndrome and I love her to pieces, but, yes, sometimes I am so very tired… 🙂 Thanks for pointing out how Jesus is so very present in our weakness, and, yes, I do recognize the need for strength and support from others, so I try to make it known. Love your decision to adopt your darling daughter with Down syndrome! 🙂
Awe, thanks Andrea. We sure do love Evangeline. And yes, we get very tired. 🙂
So love this Gillian. Yes, yes, yes.
Thanks so much!
Thank you! Just what I really needed to hear!
Thank you, really.
Gillian…this was really great. I can’t tell you how many times, as a mother, I’ve literally thought “I just can’t give myself permission to…(fill in the blank).” Thanks for the reminder that God himself gives us permission to be human, which makes us free to turn to him as our God. It all works better that way, doesn’t it? And yet it is so easy to forget!
So true, Stephanie! Thanks for taking the time to commen.
You hit it on the head, Gillian! I think for me part of the not giving myself permission is because I fear I haven’t done enough for my child. If I rest, then who calls that new specialist? If I let myself grieve, who makes the GF meal for the 7 year old? If I take a break and hire a sitter just to sit in a warm bath and read a book, isn’t that wasting time I could run the errands it’s impossible to do with 4 kids in tow? For me, I think a lot of the lack of permission is fear. So I’ll take that permission you offer, thank you very much! Even if it scares the pants off me!
Kim, you may appreciate an article I wrote for Chicago Special Parent about Chronic Sorrow. Gried will pop up at different times in our lives, and I think we may be able to handle it better if we aren’t so surprised and ashamed of it. http://www.chicagoparent.com/magazines/special-parent/summer-2012/chronic-sorrow
Fear, now that’s a ball of wax, huh Laurie. Great point to bring up. I struggle with fear too.
Wow! Your words went straight to my heart! My daughter is 6 with multiple needs and you are so right that we feel we cannot have a bad day or show those darker momoents when we doubt & mourn! Your very thought of giving me permission to do so made me cry!! Just the thought that anyone thought it was okay and gave me permission is something I needed to hear and haven’t yet over the last 6 years!! God Bless You and your insight!!
Kim, your comment almost made me cry. I am so glad you were blessed. Prayers.
Thank you needed to hear this today….
Thanks for commenting, Jenny.
I enjoyed this blog as I read with relief that your children are adopted. 5 of my 6 are, including our youngest, who is our special needs miracle. I think I struggle with not acknowledging struggles out of a sense that I`m not entitled to a bad day because I chose the life of a special needs parent. In my mind, I tell myself that my hard days are easier to take than other moms because I chose them. He~he! Not hardly. Thanks for giving me something to ponder in this area!
I struggle with similar things. Adopted or not, you are a mom, and it can be hard. It’s OK.
Seems like a simple response to a complex situation.
I *know* I have permission. I don’t doubt my friends or think myself unfallible. However, its almost impossible to feel out the balance. How much can we dump on people before we become a burden? When is it worthwhile to vent and when is it best to keep it close in (spouse, kids, bffs)?
I’m so exhausted its hard just to figure out when its TMI and who should hear it and what exactly they should do for me. Oh yeah, and the pity thing, I just get tired of being defined my my SN child. Sometimes I want to have friendships that don’t revolve around my life with him. When my strongest emotions are negative, I don’t want that to dominate my Facebook feed. It makes me sad when I look back.
The trouble I have sharing has less to do with keeping a stiff upper lip and more to do with the complex balance between letting the necessary emotional venting happen and preserving healthy relationships.
You bring up a great point, Tam, and one that each of us as parents need to figure out individually. But I definitely agree, balance is key. And it is important to decifer who to tell what to and when. I am really glad you brought this up!
Also, Gillian, love your photo with you and your precious girls!
Thanks so much!
Thank you, thank you! What an encouragement!!!
Great thoughts. We all have times we live where you took us. Sometimes we live there much more than we don’t. So much truth here found only in a life of experience. Thanks for sharing and modeling what it looks like to be real.
Thanks so much for your comment!
I’m a special needs caregiver. And, as such it’s expected that I not complain because caregiving is my job. I do what I do because I know that parents like yourself need time for themselves. It can be hard sometimes but, not nearly as hard for me as for the parents. I get to go home at the end of the night. I don’t have children but, this is definitely what I needed this morning in more ways than one! God bless you!!
Krysten, thank you for taking such great care of those in your charge. You are most definitely allowed to say it is hard, and to look to others for encouragement. Keep coming back here!
so true so true. thank you for sharing your heart….and your voice. it is so refreshing to read about things we know are true, and can’t put them into words….
Thanks Grace!
Preach it!!! Totally true and we do no one any favors when we essentially wear ourselves out and put on a false mask. Thanks for sharing this.
False masks, great way to say it! Thx.
I really needed to read this today … and I’ll probably need to read it tomorrow and the next day and the next. It is so hard to admit how hard it is, especially since my two youngest are adopted. I feel like people think, “You made this choice, you brought this on yourself.” Thank you for being so transparent in order to encourage the rest of us.
I know what you mean. I have one adopted, and I feel terrible when I say that it is hard. This post is as much for me as it is for you.
I SO needed to read this today. I have a son (7) with autism and a very high-needs little girl (1.5). My husband and I were just talking this morning about how difficult things are right now, but we feel guilty for complaining because we’re always told that “things could be worse.” But, then that seems to invalidate our very REAL struggles and feelings. One thing that is super hard for me right now is that we recently moved to a different state and we don’t have any support. No close family, we haven’t found a church yet, and are just barely starting to make mom friends. I know these things take time…but the lack of support is taking its toll. Praying that we find it sooner than later.
Anyway – thank you so much for your honest writing.
Oh, Stephanie, I wish I lived in your town so I could give you a hug! Prayers for support, soon!
Yes. Indeed. I have a child with classic severe autism and two younger neurotypical preschoolers. We live in the country and I drive hours every week for ABA, host speech therapy at the house, and try to keep up in every other way of life, including supporting my husband in his job (I used to do the same thing… long story). I cancelled something today because I feel like I’m drowning in therapies and housework and responsibility… and I was feeling bad. You hit the nail on the head this morning. Thank you for offering this gift!
I’m so glad, Crystal. You need a break, girl. Hugs to you today.
Oh, Gillian…your words are a gift. Thanks for the permission.
Thanks so much for commenting, Katie!
You are right on friend!!! I spent the early years of my son’s life in a shell. I didn’t talk about him or what was going on….I was terrified actually. But once I decided to share my thoughts with someone God blessed that and started opening doors, windows and anything else that could be opened! He brought people into my life that sincerely cared and prayed for me, my son and our family. I do think a lot of people feel it’s a weakness to be so open and vulnerable but I find it empowering! Thank-you for this awesome post!!!
Thanks for sharing from experience, Suzanne. We all need that encouragement. I appreciate your comment :).
Boy do I need to hear this today. And keep reading it over and over. Thanks.
I’m praying for you today, Mary.
Thanks so much for posting this! As women we think we are supposed to be able to do everything (and we can never do enough). As Christians we feel it is wrong to complain when we have been given so much. But your post is well taken and a great reminder that it is OK to ask for help from others and more than necessary to lean on God and not our own abilities to get through each day.
You are so right, Linda. Not only that it is OK, but that God wants us to share our weakness and ask for help. Great thoughts. Thank you for taking the time to comment.
Thanks for sharing. We all need to hear it.
Thanks for commenting, Karen. Means so much.
I needed this, my son Lenny is having issues and after 2 evaluations a Autism diagnosis is very likely in our future.
Oh Sparrow, thanks for sharing this with us. Prayers for you as you continue forward. Please keep coming back to Not Alone. We are here for you.
I don’t know why it didn’t put my name in but it’s Katy, Ginger’s friend who visited your church last year.
I don’t know why they didn’t put my name in just the account name sparrow :p but it’s Katy Oros Kouba. I visited your church last year with Ginger 🙂
So Very IMPORTANT~! Everytime you give insight, I just keep thinking MORE people need to HEAR THIS! Thanks, Gillian, for being considerate enough to share your insight and also to remind us that He provides strength through the admission of our vulnerabilities. 🙂
Thanks for your encouragement, Lisa. I keep sensing God pushing me to open up. it has been very cathartic in my parenting journey. Hugs!