It’s been a rough couple of days with Sam. He is nonverbal, and that causes a LOT of frustrations- for all of us. I’ll be honest: one of my biggest prayers for him is to just hear his precious little voice. I just want to hear my boy say, “Mama.” Goodness, what I would give… But mostly it just breaks my heart to see him get so frustrated because he can’t communicate to us what he wants or needs. So we had a meeting with his ABA team lead and his speech therapist and we’re going to start something new, a picture exchange system (PECS), so he can communicate his needs. And I’d be lying if I said this doesn’t terrify me. I’d be lying if I said I didn’t feel like this is “giving up” on the hope that he WILL speak one day. But I know it’s not. We’ll still keep trying, we’ll keep doing speech therapy and we’ll keep implementing everything possible to get those words coming. But right now? They simply aren’t, by no fault of ours or his. He just isn’t physically capable of speech at this moment. But this will only make the frustrations less, the meltdowns less and give him a means of communication beyond the few signs he has. And I have every hope that he WILL speak one day. I WILL hear him say “Mama.” And it will be one of the sweetest sounds in the world.
Last week we had a really rough day. He got home from school and it all went downhill. He had a major meltdown, hitting and trying to bite. It was awful. And then I just sat down on the ground with him, pulled him into my lap and wrapped my arms around him. I gave him squeezes and sang into his ears, and we rocked there on the floor for a long while, and he was calm. Zack captured this moment without my knowing, and it means so much to me. This boy of ours, he is so special. He is a little light. He is a challenge but it’s that challenge that makes us BETTER.
In church yesterday our pastor said something that really spoke right to me: “Embrace the pain because it’s through our suffering that we learn the most.”
And we are learning every day.
And I thank God for this sweet boy every single day. I can only hope we can be all that he needs.
More on Sam here.
I have a daughter who is a few weeks older than your sweet Sophie and I have been following your story since my pregnancy with her. It touches my heart to read about Sam and I know that God has a great purpose for him. We do not share God’s divine understanding but we can rest assured that he always has a greater purpose for any trial we are put through. I pray that you will have the strength of the Lord as you continue to raise your babies. Seek the Lord and his strength, seek his face continually.
1 Chronicles 16:11
God bless you girl. You are the mama that Sam needs and you will never not be enough for him!
I love love LOVE everything you said, and believe it in my heart. Thank you for your words!! They speak TRUTH. I needed to hear them.
Oh Katie, you are a wonderful mom and you have a wonderful, beautiful boy. The love you have for him shines through every word you have just written.
Yes, you were given a challenge, but I truly believe love makes it all better. Love conquers all.
Keep strong, keep loving. xoxo
Ugh, I agree 1000%. Love conquers ALL. I could not love this boy any more!!! Thanks for your sweet comment, friend.
And now I am crying… sobbing actually.
Not because I feel sorry for you or Sam, but because feeling how much you love your child, to the point that you focus your life, goals, prayers, money, time, and every last thing that you have to offer on giving him everything possible to make him thrive, breaks my heart with beauty and compassion and joy. Seriously Katie. I have only started reading your blog recently, but I truly find you heartbreaking in such a good way… you are a wonderful parent and more rare than you know. Thank you for everything you do for your Sam. We will all benefit from the person that he will become because of you.
Oh, Carrie, you are so so sweet. Thank you for your words!! They are life-giving. Love is EVERYTHING.
God bless you richly girl! Much love x
Thank you so much, Linda :)
You are such a good mama! Your love for him is so, so apparent! Thank you for sharing the real and reminding all mothers to be advocates for our children.
Oh, thank you so much!! We are their biggest advocates, I’ve learned this so much the past year!!
You are doing such an awesome job.
And you are definitely NOT giving up by giving Sam another tool to communicate with you. We started using signing as a way to help our speech delayed toddler and it has only made him communicate with us more. I think that laying the foundation of back and forth communication is more important than actually speaking words at this point.
Ok, so this is not completely on topic for this post, but I just wanted to say how thankful I am for the fact that you waited to share Sam’s struggles and diagnosis. I don’t know all of your reasoning for waiting, but I really love that I can look back or remember all of the posts you had about all the wonderful, tiny joyful, totally normal motherhood moments you had after you knew his diagnosis — as a mom who wonders about one of her boy’s futures and what struggles it might have (and also selfishly mourns missing out on a more typical mothering experience), it was so refreshing to see someone still sharing the good stuff and not only talking about the struggles. Don’t get me wrong – I want you to keep things real and feel like you can share whatever you are going through. But it was nice to see that you can still be enjoying motherhood and celebrating your children. Some blogs start to feel almost medical, like all they are doing is chronicling the progress their children make, but I love love love that you are still a “mom blog” that happens to have a child with different needs and still shares all the awesome stuff about kids and being a mama, and not *just* a blog all about the hard parts of a special needs kid. I hope this makes sense – really just want to say that you’re doing a great job and reading your posts about Sam make me happy!
MICHAELA. Goodness, you’ve brought me to tears!! Thank you so much for taking the time to write this to me. Everything you said- thank you. And it’s precisely what I hope comes across- to share the hard stuff, the real LIFE stuff, but show that it isn’t EVERYTHING. There is so much happiness and “normalcy” that comes along with it too. Thank you for saying all that you did! :)
Sending you so many hugs Katie. My son (also a “Sam” <3) doesn’t have an autism diagnosis but we have struggled with his development and he was almost completely non verbal until this past summer. I had all the same feelings when Sam’s therapists recommended the PECS. I was initially not 100% on board, but once we really started using it, he did so well and although I don’t think it made the actual words come any faster, it gave him a way to really communicate with us, and alleviated SO much frustration on his end and ours!! Even though has has had a burst in vocabulary, we still use the PEC system from time to time when we can’t understand him. Anyways, I hope it works out for you guys.
I have loved your blog for years and I love hearing about your Sam and his development as he reminds me so much of my own. ????
YES, that is the hope- it will establish some real communication and will alleviate so much frustration!! I love hearing stories like yours, thank you so much for sharing! And thank you so much for reading my blog for years! That seriously means the world to me that you’ve stuck around. :) THANK YOU!!
Hi, I have been following your blog since you were pregnant with Sam, and have rarely commented, but reading about Sam’s story and what you have gone through have motivated me. I work in the ABA field and know what a difficult process this is for the parents I work with and how frustrating it can be for the child as well who can’t communicate. PECS are a great tool for children to start out with, and pave the way for vocal communication. PECS are a process and don’t give up hope, but it will take time. Stay strong for your baby boy, keep advocating for him, and keep sharing your story.
Oh, Zoe, thank you so much for following along for so long! That means so much to me! :) And that is awesome that you work in the ABA field- thank you for sharing and for your sweet words.
What a sweet, lovely boy you have. He’s very lucky to have a Mom and Dad who give him so much, he is right where he is meant to be. That picture of the two of you at the bottom of your blog post is everything! What a beautiful smile xo
I am an occupational therapy assistant and absolutely love the autism spectrum!! Those kids are the absolute sweetest and can empathize with the frustrations.. have you tried a weighted vest? These can be worn really whenever and help with anxiety, frustration, temper tantrums, etc! Communication boards will hopefully alleviate some of that frustration.. I hope and pray little Sam will speak and until then always trust your momma instincts to assist his needs and wants!
My non verbal niece made huge strides with PECS after it was implemented with her. It was so great for her to get her book and hand someone a picture of what she wanted. I don’t see her often and not long after they started this system I was visiting. She brought me a picture of an iPad and candy first thing in the morning and you know, I legitimately could not say no to that because I was just so amazed at her progress. She’s almost 6 now and while most of her communication is prompted, she can say quite a few words! The first time she said “I love you” to me, it was like pure magic, and so many answered prayers. Keep fighting for your boy and loving on him. You will hear those sweet words one day ❤️
PECS is amazing! My nephew was diagnosed with ASD about a year and a half ago (he wasn’t quite 3 yet). He started PECS this past summer and made great strides! It’s so amazing to see what they have to say even without typical speech! Brooks started with an app called LAMP Words for Life which is basically like PECS but used on a device instead of a book. He uses it on an iPad. I have complete confidence that one day you WILL hear that “Mama” and all of the hard days and hard work will be SO WORTH IT! You have a beautiful boy and you’re a great mom – just continue to give him love, understanding, and opportunities <3
I have only been following you and your family for a little while now, but I am SO thankful to have found you! I connect so much with you and your motherly thoughts,emotions,struggles, fear and strength. At this point, due to all of my researching and one appointment with a pediatrician telling me she strongly feels my daughter falls on the autism spectrum my mind and heart can’t stop worrying and the unknown has been very hard for me. My daughter (2.5) babbles but regressed in speech. I just wish someone would be able to tell me she WILL talk. It’s one of my biggest worries. I can’t tell you how much I connect with you about how just so badly I wish I could hear her say “mama”. I too am not giving up! Thank you for being a great support through this journey with me. xoxo