I feel like Jackson has been labeled since he was 18-months-old and we were told he had speech delays. The labels are one of the hardest parts about having a child who is behind in his speech. I don’t want my son to become a label or a diagnosis. I want people to look past the lack of speech and discover the amazing little boy that he is.
But the truth is when a child has a speech disorder as severe as Jackson’s they can come across as being delayed in other areas as well.
We have been asked numerous times if Jackson is autistic.
People have said Jackson’s always been a little different.
I really don’t need or appreciate outsiders opinions.
I’ve had strangers recommend we have him tested for Autism (and I reply as nicely as I can: that was part of his initial speech screening and he is not autistic).
We’ve heard use your words and you need to talk said in harsh tones.
But the truth is Jackson simply can’t.
Children with Apraxia know what they want to say but their brain has difficulty coordinating the muscle movements necessary to say the words.
And what grieves me even more than the hurtful comments? Jackson understands everything we say – so how does that make him feel when people say harsh things about his behavior or inability to speak?
There have been many occasions where teaches, nursery workers, and even those close to us have dismissed the severity of Jackson’s speech disorder. Sometimes it’s as if they think we are using his lack of speech as an excuse for his sometimes difficult behavior – tantrums, disobedience, and biting.
We have always been upfront about his lack of speech when we drop him off in the nursery, but that hasn’t stopped the children’s director from humiliating us in the church hallway after he bit a child. It didn’t stop his teacher from deeming Jackson difficult when he bit at school.
That being said, we haven’t been to church in months and Jackson no longer goes to a mainstream preschool.
Because instead of people taking the disorder seriously and offering to embrace him, they’ve made us feel like we don’t belong. That he’s too difficult to deal with. So it’s just easier to stay home.
Having a child with a speech disorder is emotionally exhausting – for Jackson and for us. There’s so much frustration that comes with Jackson’s inability to communicate well. There is also the financial burden of private speech therapy twice a week.
Sometimes I blame myself and I question my ability to be his mom.
Sometimes I beg God to let him talk.
But most of all – what you see (and don’t hear) is not what you get. Jackson is more than his speech disorder.
And as his Mama I will be his biggest advocate.
I’ve never been around a little boy who exudes so much joy.
You can feel it in his hugs. You can hear it in his giggles. You can see it sparkle in his eyes.
The road has not been easy – and I worry about the future because I don’t want things to be difficult for my son.
As his Mama I want to fix it.
This journey is far from over, but daily there are glimpses of His Grace.
There are new words. Great speech therapists. Hugs and kisses and giggles.
A quiet life bursting with joy.
Sharing this with a dear friend whose son also has Apraxia. You are not alone! Keep advocating for Jackson and loving that sweet boy like only you can as his mommy, and know that others are praying for you on this journey. Thanks for sharing the struggle and the victories with us!
Thank you for sharing with your friend. I would love to connect with her if she feels up to it. Thank you for sweet words and encouragement today.
Thank you for sharing! We on the outside often don’t know how we’re hurting others when we say things so casually, especially when we don’t understand since we’ve never been in your shoes. Thank you for bringing awareness to such a common issue as speech delays. We all need to be more careful in how we treat and talk to children and their parents, especially when we don’t know much. Praise God for your openness and your willingness to praise Him through it all!
Thanks for your sweet words, Alicia. We really never know what someone is going through or facing. Grace. We just need to be full of grace – towards ourselves and others.
Way to be real! I’m so proud of you. Praying for Jackson (and you!) on this journey. xoxo
Thank you Kristin! I so appreciate the prayers 🙂
This was so perfect. My son wen through about a year of speech therapy early on. He had a slight delay due to chronic ear infections. My sister is a slp so I knew what to look for. You have to fight so hard for them and I just loved what you had to say. Bless you , Jennifer.
Thank you so much! I’m so glad you were encouraged and so glad that your son is doing well! Thanks for stopping by my blog. 🙂
You are a wonderful mom with such an amazing heart for your son. Thank you for sharing your heart so openly and tenderly. So many yeses to this >>> “And as his Mama I will be his biggest advocate.”
Love you, friend. xoxo
Thank you Beth. You always encourage me so much. Thanks for spurring me on in this mama journey. Hugs!
Just loved how you conveyed your mama heart to us. You are such a beautiful mom to see beyond the behavior and reach for his heart. I am praying you will be surrounded by encouraging, helpful people as you walk this journey.
Lori – Thank you for your sweet words and for your prayers. They are MUCH appreciated!
He sounds like such a sweetie! My youngest had a cleft palate. So, no talking. Period. When he had his second surgery, he was 22 months. So, it was a long haul before he mastered verbal communication. I know it is soooo hard. Bless you for being honest. You help others when you share your story. Blessings! Keep being Mama bear! You are doing a great job!
Thank you so much for your kind words and encouragement. And thanks for stopping by the blog! I love hearing from other adoptive mamas! 🙂
Hello Jennifer, I searched Apraxia Faith and found your family’s story–with similarities to mine. I am hopeful for my son and yours. I am glad to find another Mommy drawing from her faith. God gives us gifts of challenges and joys. God’s love and grace will light our paths and the paths of our children. I, too, lean on my faith to trust God’s plan is great, only His wisdom is all knowing yet our motherly love is also everlasting.
Our sons seem to be the same age, if I am reading your blog in real-time. I would be interested in exchanging more thoughts, ideas, activities, therapies, best practices, etc.
Best wishes- J
Hi J – Thanks so much for stopping by the blog and leaving a comment. I would love to connect with you and exchange thoughts, ideas, etc. You can email me at jenniferjacksonlinck@gmail.com or feel free to leave me your email address.