I’ve thought about this post for awhile now. Here I sit, typing, re-typing and hoping the right words will come.
Fifteen and a half years ago I gave birth to the most beautiful baby boy with sparkly blue eyes. I was a young, naive mom but it was what I had hoped for in all of my twenty two years of life. The next two years were spent according to plan. He was happy, healthy and a beautiful start to our family. Something became clear around the time I was ready to deliver J’s baby sister. He wasn’t talking much. He wasn’t answering to his name. And our long road down the autism path began.
This isn’t my first mention of the “a word.” I started a series that I haven’t gone back to finish yet. It’s the story that changes day to day, and sometimes hour to hour or even minute by minute. The last several months with my sweet J have turned very hard. His days full of smiles and that gut laugh that we love so much have become fewer and farther between. Is it his school, puberty, getting older in general, meds, his schedule? We just don’t know. It could be a combination of things. Yes, most likely it is a combination of things. Because he only communicates basic wants and needs (“Need to go potty,” “I want chips,” “Get jammies on,” etc), he isn’t able to tell us what is going on which causes everyone to be frustrated. Especially him. But he has grown more aggressive and unhappy over time. Just writing that feels really hard. I want to protect him. I want to protect us. I don’t want it to be true. But it is.
We knew from the time he was really little that someday we’d have to think about the future and what our family would look like as JJ got older. It would be different than what Josh and I thought of while dating and we talked about the six kids we’d have (ha!) who would be well mannered geniuses. So naive. But I also thought that he’d progress over the years that it would be very clear of the path we should take. That most likely he’d always live with us. And yet it has become hard and what seems like impossible as J’s aggression and behaviors sky rocketed. We knew it was time to ask for help. We started begging for help and it seemed very far away. It’s been why the h is nobody helping us when we reaaaaallly need the help? That is a very scary, lonely place to be.
After months and months we finally found something that we feel at peace with. J will live outside of our home. Writing those words makes me want to throw up. We did a trial run for a few weeks and for the first time I felt relief. Again, just writing that makes me want to throw up. And I feel guilty and like I’m just not enough. Why don’t I have more patience? Understanding? Why can’t I figure out what is making him so upset? I know they say (whoever “they” are) that you are never supposed to ask “why?” But going through a challenge without questioning why would make me stagnant and not learn anything from it. So I’m asking the tough questions, digging deep and trying to do the very best during a very worst time.
During the trial run, the communication was great, J seemed happy and well taken care of. It had gone better than we could’ve imagined. I realized that I have been holding my breath for years and years – thinking 24-7 about if he’s happy, safe, what his behaviors are like, how he will be that day, if I’m doing enough, how our other two kids are functioning, etc. It’s what any mother would do for her child of course. But it can be a hard way to live. And every time we talked to doctors, pyschiatrists they told us that we have to do what’s right for our family as a unit. It still feels heart wrenching to have to make such an awfully hard decision of what’s best for my son. And as much as I absolutely hate it, this is what’s best for him. And for us. We don’t know where this road will take us. But we know for now it’s the right one. And with that comes reassurance and hope.
While I’m sure some of you reading this can relate, there are others that will never know what it feels like. It’s not for lack of trying to understand or be empathetic. It’s just one of those “you don’t know until you walk in my shoes” kind of things.
I am writing this post because we all have our stuff. Trials and heart break are unfortunately part of being human. Losing my Dad felt like the hardest thing EVER and I was ready to be done with challenges. But they just keep coming. Being an adult is tough. And I think every person at some point in their life hits the point where your best just isn’t good enough. It’s a humbling place to be. Not talking about it just makes it more shameful. Once again we have experienced the cycle of grief. Denial. Anger. Bargaining. Depression. Acceptance. The truth is I’m getting sick of those dang cycles.
I’ve written about how to encourage someone going through a trial. I am by no means the expert but I know what has been helpful to me with all of the challenges our family has faced.
- Lead with love
Several months ago my sister and I had a hard talk. She started it with “I’m not really sure how to say this but I want you to know that I’m concerned about you….” It was a great lead in to what she said next. I knew that more than anything she wasn’t judging or trying to convince me of anything. She was concerned and showed her love to me. It meant a lot and actually got the ball rolling down to where we are today. Was it difficult? Yes. For her and for me. But I appreciated the approach she took and will try to do the same. - Be patient
This applies to a lot of different things. Specifically in loving someone through a trial, I’m talking about the time that it takes to work through things. There are lots of different emotions through that cycle. Being on the receiving end isn’t always fun but vital. Know that as much as they want for a trial to go away, it sometimes does not. Your patience and understanding with that can majorly help. - Give them what they need
Everyone deals with challenges in their own way. Some want to talk about it a lot. Some want to never talk about it. Some want to hibernate until it’s over. Some do all of the above. (raising hand here) Go with it. Let them take the lead to let you know how to help. Don’t try to make them talk if they don’t want to. Don’t change the subject if they want to talk about it. Just be perceptive and open minded to what type of comfort they are in need of. You can even say “I’m not sure what to do in this situation but I want you to know I’m here for you. Can you tell me what I can do specifically to help?” That will go a LONG way in the person knowing how much you care.
I am blessed to be surrounded by people who have shown their love and support over many years. Most recently I’ve cried more tears than I ever thought I could and leaned on a lot of shoulders. I have friends and family who have given me space or been there right when I needed them. I hope that I can be that same someone during a time of need. I also have to say that as much as Josh and I drive each other absolutely nuts, he has been such a rock during all of this. He is the one who hears my cries and disappointments, knows the agony that I do and has been the ultimate teammate. J is so very lucky to have a hard working, loyal cheerleader like his Dad. And I’m fortunate to have someone who is right there in it with me. We have grown as a couple and a family through all of this and I don’t think that’s a coincidence.
I want you to know that the person who writes this blog is one who has struggles, real life challenges every single day. I post pictures of stylized food and charts and printables. But I am messy, unorganized, scream at my kids way too much, have suffered from depression and anxiety, try to people please and end up saying things I regret. Often. I try and I try but I often fall short. I am learning (although rather slowly) to cut myself some slack and to stand in the present. To look for the good. Having this sweet boy in our family has solidified several things – to not take any step in the right direction for granted, true unconditional love (the kind he gives) is magical and often embodies things like patience, compassion and gratitude.
My mom has a sign in her family room that says “Not to spoil the ending but everything is going to be ok.” It’s my new favorite.
Just for today, I know that even though my best sometimes isn’t quite enough, it is going to be ok.
Wondering how things have turned out? Read “When your best turns into enough..”
My dear friend. I wish I had some idea of what has been going on with you. I fear I leaned on you too much a while ago and pushed you away. I’m so sorry for your heartache, but so grateful that you feel peace from your decision. You have a lot of love in your heart.
Mique, thank you for taking the time to write this. I know that most of your readers have likely not nor will go through something quite like this, but it is sometimes an important step to speak your decision to the world.
I want to reiterate what you said, that everyone has their stuff, and my situation is not exactly like yours, but that doesn’t make either less valid or difficult. That said, your post could not have come at a better time in my life, when I am feeling more alone than ever because of the fear of my loved ones judging me negatively for a massively difficult decision I had to make. In my case, I have to move away from both of my kids for about a year. I would elaborate, and I promise it makes sense when I do, but I just want you to know that decisions that make us sick to our stomach are sometimes the best ones, and we really will all be okay. Anguish can be fleeting if we let ourselves feel it for a purpose.
I am overjoyed to see that your decision has led to a stronger household unit! It gives me hope that after my trial run, things might be as good for us. <3
Stay strong if you can, and when you can't, allow yourself tears.
Thank you for sharing your story. Although I don’t know you, your love for your family is evident and I can’t imagine what a hard decision this must have been. I have a special needs son who is 6, and 2 other children. It can be so difficult to balance the needs of each one individually. I admire your strength and honesty in this post ?
Miq,
I sit here after reading your post with tears in my eyes. I just want to say that your words hit their mark and are so powerfully valuable to us. We have seen a small fraction of your interaction with J and from our view you and Josh are wonderful friends, and amazing parents. We are lucky to have you as friends. Thank you for baring your soul and sharing your thoughts and experience.
Oh my dear sweet friend. How I miss you. And how bad I feel for not being a better friend to you. Sometimes when one is wrapped up in their own disaster of a life…they forget that others are hurting too. It’s such an isolating feeling, and yet…it doesn’t have to be. I have no idea how to even fathom what you’re going through right now. But I do know that my Mom keeps telling to let my trials go to the Lord. Let him bear my burdens. And sometimes…when I listen…which isn’t often…that helps. Just remember that the atonement wasn’t just for your sins. It was for your sorrows as well. And if no one else in the whole wide world really knows what you’re going through. You’re still not alone. I will vow to be a better friend. And help you in any way I can. I love you!!
Praying for you and your family Mique. I’m sure you telling your story will help many others. Thanks for sharing!
I LOVE you, girl!! Wish I was closer to be one of those shoulders you could cry on. I’m praying for you and your family, and especially JJ!! XO
I can’t even begin to understand all of the emotions that you are going through. I don’t even know what to say, except that I admire you for all that you have done and all that you continue to be. For being willing to take the step that is best for your family as a whole. And for being brave and open about it. Being a parent is hard enough without all the extra “stuff” in the mix, and you are such a strong, strong woman. I know I don’t know you, but I admire you, and pray that some of those trials will lessen and that you all will have the peace that you deserve.
Mique, I wish I could do more. I wish I could be closer. I wish I could give you a hug.
I love you sweet friend and my prayers are with you and your family.
Beautiful. You had me in tears, I’m not in a situation like your’s but I know several people that are. We all need to be reminded of other’s struggles, and we might look perfect from the outside but inside we’re human, and need a hug sometimes.
THANK YOU, THANK YOU, THANK YOU! for sharing. I’m finding more and more that we are all going through many struggles and I’m glad that you pointed this out. As someone whose son just got diagnosed with Aspergers last week (I know it’s not the same, but…) on top of many other challenges, I appreciate the times when people share their stories. They let me know I’m not alone in struggles. Mine may not be the same as everyone else’s, but we all have them.
Thoughts and Prayers for you and your family…
Em
Thank you for sharing your heart on this! I would like to share a sister’s perspective from a similar situation. My brother has autism and is nonverbal, so we too understand the frustrations with communication. After much thought and prayers my parents placed him in an amazing facility outside of the home when I was 11 years old, he was 16. It was one of the hardest things we went through as a family, however, one of the best. He was able to get the physical care he needed as well as training to develop skills for a job. Fast forward to today, he’s 31, has held a couple of jobs in the community such as paper shredding, cleaning up parking lots, and it is such a joyous occasion when he’s home for holidays, birthdays, weekends, and vacations! From my perspective, it really relieved a lot of the stress that I was accustomed to throughout my childhood. My parents weren’t constantly concerned about his safety and we could really enjoy the days he was home with us. I always thought of it as him going off to “college” and we’ll see him again soon! :) You have a powerful story, I will certainly lift your family in prayer as you adjust to a new normal.
Oh sweet Mique I wish I could hug your neck and bring you some fried chicken or pound cake or something (my sweet momma taught me that sharing company & food always helps make tough times a little easier). I’ve followed and admired you for years. This post though? It gives me a new found love and respect for your heart. While my struggles aren’t the same (like most all of us) I know what deep, heart breaking, soul wrenching pain feels like. You, your sweet boy and your family are in my prayers. My hope is that you can sense all the love and good vibes that so many are sending your way. Life is a beautiful struggle ❤️
God bless you and keep you in His loving care. Thank you for your inpsiration!
Mique- You are so brave and strong. I’m so thankful to have your story. I have a friend in a very similar situation, who is having to choose to have a very troubled adopted child live away from home, and I see her pain, and hearing your story helps me know how to be a close friend of someone in a similar situation. My heart hurts for both of you. I want to give all my love and support in whatever choice you need to make. And coming from my own hard places, just remember when the judgment voices come (whether in your mind, or from others) it’s all a lie, and that God loves you through it all. xo emily
Mique,
Your best is enough. You know enough to do what is best for J and your family.
I read your blog daily and just wanted to send my friendship and support. I read your post yesterday and forwarded it along to some friends and family with the simple tag “please read and be inspired…” Whether we can understand your struggle or not it took such courage to put it out there. I wish you the strength to continue to do what you and your family feel is best for your son and your family as a whole. The fact that he is thriving is such a testament to how you love and support him unconditionally. He is so lucky to have such an amazing Mom!!!!! You are a rock!!!!
Best regards and God Bless,
Tricia Ann
Oh goodness. My mother-heart cannot fathom the pain yours must be in. This is the pain in childbearing…the constant tearing away of our children from us since birth we all have to a degree, but yours seems a more violent ripping away right now and my heart breaks for you. I will truly be praying for the transition and for peace. And your words in how to help a person through a trial also spoke to me. My husband is going through an awful time of depression and your words are so valuable. Thank you; I’m amazed at how even in this valley you still long to give others what help you can.
This was beautiful, honest, and sincere. Thank you for sharing…these are the kinds of posts that build a community in a time when we all desperately need community (but have a hard time finding it). Thank you!
I came across this on Pinterest. I am 58 years old and just found out in March that I have Aspergers. I was shuffled through the mental health system with diagnoses that were not true for over 30 years. I always knew I was different. I have difficulty with my emotions, keeping things in check. I have found that there is little info for adults with autism. I have just today begun a site called Adults With Autism. Because those children? They grow up to be adults, with the very same challenges, and little support. Don’t beat yourself up. No one has walked in your shoes. And judging yourself won’t change what is. It isn’t his fault. It isn’t yours. It just is.
Brenda
What a beautiful and honest post. I, too, have struggled with a child who has special needs. She will be 17 next month. She doesn’t have A but has aTBI. I understand some of your struggles and having no one to understand. Don’t think your best wasn’t good enough it was but maybe he needs something differeent for awhile. Sometimes its hard for us moms to admit that we sometimes need a break from our children and sometimes they need a break from us in order to grow. Hugs to you! I am thinking of you as you enter this new journey.
Sending you love and grace, from one mama to another. Thank you for being real and sharing yourself with us.
An unbelievably hard situation to be in, but you are doing everything right. You, and your family, are so strong, and you are such an inspiration to others struggling in similar situations. Sending you strength.
I’m one of those who doesn’t know what it feels like. But because of your willingness to share, I have been strengthened in my own challenges, and I have a little bit better understanding of yours (and countless others in similar situations). Thank you for your honesty. We’re all right there with you. I think we put a lot of those pressures on ourselves due to our “culture” of striving for perfection. We all need to be more patient with ourselves. I also love your tips on encouraging someone going through a trial, and your mom’s quote is perfect! Thank you!
Beautifully said from a hard place in this mortal journey. Prayers for the continuing road. We have dear friends who’ve faced similar challenges but mixed all around; being a parent is hard! I really have come to believe in the lyric “God gave us families to help us become what he wants us to be.” Here’s to Becoming!
So well written and sensitively shared. I just want to give you a big old hug. I am going through some much milder challenges with my 17 year old son, who is mildly challenged in this area and it is so frustrating for me, your situation sounds ten times MORE challenging. I can’t even imagine. I just wish you peace and joy and that happy ending we all hope for.
Very touching post indeed! I question my parenting skills on a daily basis with my (and I hate to call it this) ‘normal’ kids, so I can only imagine how hard this must be for you. Thanks for sharing your story and I’m sure it’ll help others. I love your mom’s quote too!
Wow, I’m in tears reading this. I’m sorry, I’m sensitive and a cry baby. Lol. You are true and raw and undeniably an awesome person and mom and I pray God continues to bless you and provide (as he has) the best for your family! Thank you for sharing this and for allowing me to read this. My baby girl is 3 and is on the spectrum, all I can say is…. “God bless you and hugs to you forever and ever”
Very touching post~Thank you for being so frank and real. We are all broken in some way or another and it’s reassuring to know that through that brokenness, whether it be depression, or physical problems, heartache of loosing someone we love, we can still find compassion, understanding and love. The good life is accepting our flaws as well as the flaws of others and encouraging others, giving support and having compassion.
While the parenting challenges come in all different shapes and sizes, I suspect that the feelings of ‘my best not being quite enough’ are pretty much the same. I can so totally (and painfully) relate to this. So glad you have found a solution for the family. I know how hard those decisions can be. Best wishes to you all for success in this next phase and for peace in your decision.
Thank you for sharing your story -praying for strength and peace for you and your family. Im sure the decisions you are making are exactly what your family needs.
<3
Thanks for sharing such a personal experience with us… I worry about my sons future every day… I don’t know if he will ever be able to live on his own, and that scares me to death. He has Aspergers and ODD, and has been getting worse (and more agressive) making family life with our other 3 so hard! Reading this has made me realize I need to take action and not let things get any more out of control. Hugs to you, I know your decision was NOT an easy one to make, but just know that it was the best for everyone..
I have only a tiny idea of what you have gone through. I have worked in schools for years and have known a few autistic kids. Being with them for just a short time made me marvel at the patience and love their parents must have to take care of them 24/7.
Whatever decisions you make are done out of love for all your children. I hope your whole family can grow and be happy, including your son.
Thanks you so much for sharing this part of your story. My husband’s parents find themselves in the same kind of situation with their son who has an unnamed mental handicap. He is 35, and his aggression has built up over the years so much that the is an unpredictable danger to anyone he is around. When the time comes, I am going to give this post to them to read. You never know how much of a blessing sharing the hard things in your life can be to others. Thanks for your honesty and your bravery and the inspiration you have provided.
Mique, you are beautiful and perfectly and wonderfully made! Even in all your perceived shortcomings you put the needs of so many others first. Your heart shows who you really are-a mother, daughter, sister, friend who blesses others beyond measure. God gives us a village to do life with, and although it doesn’t always look like what we pictured, and isn’t always easy, it’s His desire. To do life together. There is no doubt in my mind you have prayerfully considered every option for your family and are doing what you absolutely felt led to do for J. I’m incredibly in awe of your strength. What an amazing mama. Thank you for continuing to share your perfectly imperfect story and inspiring others to be bold and truthful-even when it’s hard.
Thank you for sharing. I can only imagine the feelings you are experiencing. I can tell you truly want what is best for your family. I wish you all the best.
I have been incredibly touched by this post. For some time our family was involved in foster care of a child who was a sociopath (now in prison for attempted murder) and for many years in the adoption of his sister who was unable to bond (attachment disorder). Although our situation is very different from yours, I want you to know that I understand the feeling when at the end of the day your home is no longer the refuge that it once was. And I also know that moment of realization that your whole family is being sacrificed to a situation that needs to change.
Thank you for your inspirational words about helping those going through a trial. You have such strength to be able to formulate those thoughts at a time like this. I will take those words into my heart and believe that they will help make me a better person. I’m smiling now because at my age of 70 I’m still learning that we are never truly “done” with becoming better people!
Last comment–I love your mom’s sign. I’m going to pass those words on right now and I’ll bet they’ll make a difference in someone’s day, just as they have in mine.
Thank you.
I know that was hard to write and wanted to take a minute to thank you for sharing. I am not in the same situation, but my friend is and I will be sharing. We all have those critical moments of decision making that make us question ourselves to the core. You are very brave: for making the best choice for your family unit and for sharing your story. Thank you for your honesty. Wishing you continued peace and success.
Peace be with you. Thank you for sharing so genuinely.
That was absolutely beautifully written. I am not in the same situation and cannot begin to imagine what this feels like. You are beyond strong. I know your words are going to help someone else, I certainly will pass them on to a friend!