Special Needs: A Snapshot Into Our Life

I can do all things through him who strengthens me.
Philippians 4:13

This past week I spent 4 hours with Elizabeth & Daniel’s doctor at Children’s. 4 hours! We had so much to update for both of them.

As Elizabeth and Rebekah (both 17) near adulthood, it’s time to (quickly) figure out guardianship and conservatorship. So we spent time with Elizabeth’s social worker at Children’s trying to get all our ducks in a row. The doctor and social worker helped us with an attorney, strategies to keep vulnerable people safe (from themselves and especially others), gaining independence and safe ways to do so, and making more appointments. The nurse gave her a new fidget ring to hopefully help her stop picking at her fingers (not just hangnails, but all the way down the skin to her knuckles!). We discussed depression and anxiety strategies in addition to getting her a new counselor, since hers switched practices and is now too far away.

We discussed her current IEP and special ed classes she’s taking at the public high school, plus how to get her into the transition program through the school without graduating her first. Our plan is to have her do 3 more years of high school, since this year is her freshman year here at home. The school, of course, counts her as a senior and wants her to graduate with them (even though she’s a homeschooler). We’ll be working through an advocate at Pacer to get us all on the same page with the same goals and make sure she’s still technically a homeschooler. Once she graduates, we want her to attend Free Lutheran Bible College (where Lydia currently attends). The fun part is that all 3 teen girls still at home (Rebekah, Elizabeth, and Abigail) will graduate at the same time and attend the college together. Exciting future! And expensive… LOL But Elizabeth’s ultimate goal is to become an auto mechanic. She has a knack for it and loves cars. The trick will be getting her into that field safely as a vulnerable adult (meaning she’s easily taken advantage of, in many ways).

There are so many things to think about to make sure she is getting what she needs as a young woman!

In addition to Elizabeth’s future, we also now get to see a geneticist for Daniel. Some growth issues are causing questions (not necessarily “bad,” but odd). He is now shorter than everyone but Andrew (7), who is quickly gaining on him. He has very small feet compared to body size with extremely slow growth (I buy him new shoes every couple of years), and we have no signs of puberty as he nears 13 in a few months (our other 2 12-year-old boys are deep in the throes, including voice changes happening!). Coupled with the cleft lip he was born with and the learning struggles we finally got diagnosed last year, we want to make sure we’re not missing anything important.

BUT. HE IS READING! Like, really, actually reading! He and Jonathan joined Matt’s confirmation class with Elizabeth and Aaron a few weeks ago, and he said Daniel seems to read better than anyone. This, the same kid who struggled with c-a-t for YEARS? For awhile we wondered if he’d ever learn to read. Nothing short of a miracle there. We praise and thank God for the significant progress he has made over the past school year.

All that was just from Thursday. LOL

We continue to work on speech therapy with Aaron and Hannah, while we practice with Daniel at home for now. Hannah had also been working with an occupational therapist on things like buttons, visual tracking, physical balance, and proprioception.

We’ve been tackling ADHD & sleep medications & supplements for Aaron, Elizabeth, Daniel, and Ruth. And there’s always something to do or change with Ruth. LOL We have had a lot of behavioral issues pop up with several kids over the past couple of years, some of which we have chosen to explore prescription options to help. It’s never been our first choice, but sometimes – it’s needed. We have had significant improvement with Elizabeth, Daniel, and Ruth, and while we’ve seen some improvements with Aaron, we’re working on finding the right combo for him. Their doctor is AMAZING! If you live near us and want a recommendation, shoot us a message!

We have more neuropsych evals to do this year. Hannah recently completed one, and we are waiting for the written report to see what else we need to work on with her. Lydia requested an eval for herself to get accommodations and help for her suspected ADHD & dyslexia. At home here I can accommodate their learning styles and needs super easily. At college… Not so much… Abigail is being debated on for an eval. She’s almost done with freshman year of high school, but again – I can make changes and adapt easily, but college won’t be able to. Having those diagnoses earlier will be more helpful than struggling through college like Lydia before being able to get the help they need. I also desperately need to get Jonathan in (plus get some sleep help for his rocking at night), and we need re-evals for both Rebekah and Aaron since it’s been several years for both and Rebekah is nearing adulthood. Very glad Andrew is showing no signs of needing one – yet!

Since Rebekah has never been seen at Children’s, I can’t get the kind of advocacy for her there as I can get for Elizabeth and Daniel. But now I kind of know what to do for her. Sort of… Honestly, I really wish I had someone to advocate for her, too. I will have to look into that, probably through Fraser where she was initially diagnosed with autism and where we’ll get her re-eval through.

Elizabeth has been complaining for a few months of numbness and pain in her thigh. She’s been through 2 MRIs already, and both show everything to be perfectly fine. We’ll be meeting with her doctor in a few weeks to discuss further options.

I tell you all this not to complain or scare you away from special needs (or big families, ha), but to be honest about our experiences and life. Special needs are no joke.

But it’s also a pretty effective way to force you on your knees, not relying on your own strength, organization prowess, or ability to cope – but to trust God’s promises and provision that He will take care of it all. He loves our kids a whole lot more than we do or ever could. He regularly puts people in our sphere who come alongside us to help us navigate this path. He gives us everything we need & more – physically, spiritually, mentally, financially, emotionally – to get through the tough, long, and tiring days and to enjoy the peaceful, happy, and easy times. “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9). It’s only through His grace that we make it through some days, and it’s His love that keeps us going and growing.

Special needs are no joke, but neither are God’s love, grace, and mercy. We mess up all the time as parents and have to beg forgiveness of God and our kids, but despite our imperfections, God chose this life for us. The best choice I have made in my life was letting God have control of my life, forcing me to trust in His provision and plan. It meant giving up control of the big things and even the small things, but as I let Him lead, I have amazing kids with amazing gifts who need me to help them be the best they can be.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.
Jeremiah 29:11

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