Once and done

I often think of the adoption information meeting I attended one Saturday afternoon years ago in a city near us.  I mistakenly thought it was about adoption in general, but it was about adopting from China. I decided to stay, since I had driven all the way there, especially since there was only one other couple in attendance.  And I figured I would probably learn something.   

The presenter explained the definition of special needs adoption as being on a spectrum from medically fragile to hearing loss, and added, "If the child has hearing loss, you get hearing aids, and it's once and done." 

I am here to say respectfully that there is nothing once and done about it.  Infants require new molds to be made frequently for new ear molds. (And then when the mold is returned from the factory, it requires an appointment with audiology to fit the mold to the hearing aids.) The mold tubing can break.  The child's hearing can change, so there are frequent hearing tests to stay on top of that.  

BK was always good at letting us know when a battery died, and by the time he was 3 1/2, he was changing his own batteries (with supervision). 

He graduated to rechargeable hearing aids just after he turned 6, and started keeping them in his room, putting them in his charger at night and in his ears in the morning. 

(He also had 6 or 7 years of speech therapy and he - and we - had 3 years of commuting 70 miles to school.)

At 9 he graduated to hearing aids with domes instead of molds (this is the more invisible type).  But with technology comes technological glitches. 

When we travel, I take a hearing aid troubleshooting bag along with our first aid bag. 

I cannot count the number of times I have shipped a hearing aid to the pediatric audiology clinic to be repaired or (more frequently) to be shipped back to the manufacturer for repair or replacement.

One was in for repairs for a few weeks, and then we were gone 10 days.  When we got it back, we discovered it needs to be reprogrammed. We attempted a remote programming appointment, but the app wasn't working.  That required a 70 mile (one-way) trip for an appointment in-person.  

Hearing loss is not once and done. It's a lifetime of appointments, strategies, and potentially anxiety.  One morning in church, BK said he wished there were a laser pointer so he would know what words the congregation is singing at that moment. :( 

Plodding onward

It's a season of plodding.

I had my infusion yesterday, and I am just wiped out, even though I slept soundly for 2.5 hours of the infusion. 

I aim to join a monthly prayer meeting for Japan (6 AM my time), and had missed for several months, but got up today so I could participate. What a blessing! But I do not feel awake yet at 9.30 AM.

We had a lot of storms the past few weeks, and that wears on a person (a mom of anxious kiddos). 

Every day is touch and go with a certain situation in our life. 

I spent five hours Wednesday by the side of one of our children who was having a difficult time. Afterward I felt like I had been through the wringer. 

I had to drive to & from Wednesday night church (Awana & prayer meeting) for the first time in 4 months, as field work is slowly beginning and Jim was working. 

Jim wants to do more in the fields, but it has been rainy & there is a lot of rain in the forecast. 

I'm feeling nervous about preparing our house (emptying these rooms) for new flooring in 4 rooms + bathroom, closet & laundry room. 

I'm feeling apprehensive about the transition from school year to summer vacation (6 weeks to go).

My body is still not fully recovered from pneumonia.  

For this we have Jesus. And He is real. And He has all power. And He can answer seemingly impossible prayers!

Passing Out Info

Text from a friend:

Our neighbor is asking for some sort of extra curricular for a first grade boy who has special needs. He gets over stimulated easily but needs some socialization. Any thoughts or ideas?

A few clarifying questions & 18 recommendations later ... my friend texted back: 

You. Are. Amazing!!

You should have a job passing out info! 

My reply: 

I just had a conversation with the principal and she said the same thing and asked if she can give my number to parents. Absolutely! I’m happy to help. I know how hard parents want to help their children and yet it seems impossible to even know where to start looking.

And you've done so much leg work. You should be an advocate or liaison for kids!

Yes, it's no surprise that moms of special needs kiddos often become advocates. 

I think this might be part of my answer to the question, "What is my 'running?'"

Related to that link, what is your "running?" What is that thing, which when you do it, you feel His pleasure, and you know, "THIS is why God made me!"

Facebook Memories Through the Years

I don't journal, but Facebook does it for me. :) I enjoyed this trip down memory lane in my FB memories today:

2009

just reserved a car for 2 weeks in Orlando ... but not for myself.
Back in the day when I lived overseas and served as a some-time administrative assistant.

 
2010
Yumm! Biscuits & warm molasses at Mom & Dad's for breakfast this morning! Childhood memories re-lived.
Not sure what the occasion was. No doubt guests at Mom & Dad's, and I was invited. :) 


2014

Tomorrow will mark 3 weeks since we brought BK "home" to a borrowed time share and will be our 5th move. Jim has a ticket to return to us, after a week at home, but that is dependent on the Interstate Compact paperwork coming through. Praying the ICPC will come through today ... or tomorrow morning.

Those first weeks of parenting were stressful ... staying in a time share & then with two different families, Jim flying back home to work, and waiting on paperwork that was completely out of our control

2020
65 miles
2 hours
3 vehicles in ditch or median
1 napping girl 
And a grateful heart
Wish I would have left Champaign at noon instead of 2.

Driving home from BK's school in a snow storm ... I don't miss the commute there in the winter!

2022
If you’re looking for an addictive book series that also is instructive in sharing Jesus winsomely with people who don’t know Him, here you go.  (Grace series by Christine Dillon)
Highly recommend!

2025

Just over here serving up pure gold for LM’s breakfast  
Glad the price of eggs is more reasonable these days. 

A Prayer for Sanctity of Human Life Sunday

{a week late}

Dear Lord and Father of mankind,

We praise you for being the Creator of all things, for breathing into Adam's nostrils the breath of life. We thank you for the gift of life for successive generations on earth. 

As an adoptive mother, I thank you for our children's birth mothers. I thank you for their courage. I thank You for the hard decisions they made. I pray You will meet them in the lifelong pain they carry of separation from the child they birthed.  I pray You will provide all of their needs - spiritually, mentally, and physically.

For our children (and all adopted children), who carry the trauma of sudden separation from the only heartbeat they knew for the first nine months of life, Lord, please meet them in their trauma. Help them know You as their comforter and their refuge and their strength.  And as they bear the consequences of any decisions their birth parents made or circumstances they were in when they were yet in utero, be their helper, provide all they need either to overcome the struggles or else to live with them with peace.  Help them to thrive to the fullest of their God-given abilities, and to know You as their perfect Father. 

For adoptive parents, give each one wisdom beyond their years or experience. Give them strength. Connect them with resources. Provide what they need.  Be their refuge and hope.  Make their families microcosms of Your family.  Give them joy.  Help them grow in their knowledge of You, as they model to some degree Your heart of adoption toward Your children. 

For Your church, O Lord, help us love what You love. Help us love who You love. Help us be the hands and feet of Jesus for hurting people. Help us model family as You created it. Help us show Your grace and Your mercy and Your forgiveness and Your long-suffering to each party of the adoption triad.  

May Your Kingdom come. May Your will be done. On earth as it is in Heaven. 

Amen.

Dream ~ Update

A few weeks ago, I wrote that I have a dream and a prayer of a Special Ed Christian School in Central Illinois. 

I have often expressed that desire, but it was a conversation I "just so happened" to have rather in passing with our pastor a few weeks ago that led me to start sharing my desire and connecting it to a request for prayer.  

As I have shared my dream and prayer with more people, I have added the following: 

Both our pastor and also the principal of a local Christian school have told me that countless parents have expressed this same desire to them - wishing that there were a Special Ed Christian school in central Illinois.  

I have no plans to start a school, to start a school board, to start a website, to start a mailing list or even to hold an informational meeting. I am an ordinary middle-aged mom with children with {mostly invisible} special needs. 

But I can mobilize prayer and watch God do miracles. Won’t you join me?

Expecting great things of our great God,

The response to my invitation to pray has been more than I could have imagined! 

Reply from another special needs mom when I asked if she would pray:

Absolutely!  Funny you should mention this about St. Louis because my friend started a foundation called One Classroom that hires paraprofessionals to accompany children with disabilities into Catholic schools.  

I love the way you’re framing this…I feel the same way about some sort of program for adults.  I just haven’t been able to articulate it as beautifully as you did.  I will certainly join you in prayer!

And from another prayer mobilizer:

I love your idea! It certainly sounds like it could be from the Lord. I will pray, and ask every prayer warrior I know in Central Illinois to make this a matter of prayer. 

More encouragement: 

I will PRAY as you are. We see it too! If God sees fit to work in this way somehow, some way, we would love to see it and likely connect with it!

From a retired teacher who has worked with special needs students:

Wow! Yes, yes, yes! For years I have thought churches should consider this concept equal to a missions budgeted item. 

From the principal of a Christian school:

I will definitely join in with you in prayer.  There is a definite need for what you see in your dream.  At {our school}, we see families all the time who desire a Christian Education that have learning needs that we just can’t provide for them. 

More encouragement:

I am passing your note along to our Elementary Principal.  She has a special place in her heart for this area of education and would want to pray with you also.

And from a friend: 

God can do all things 

The only way this dream could become reality & this prayer request could be answered is because God can do all things. 

Until then I will keep mobilizing prayer and boldly spreading the need far and wide, waiting for HIM to connect the right resources with the right people.  I can't wait to see what our great God does!! 

A week

Monday I got 16,000 steps cleaning LM's room. [It was a major job, involving multiple bags of trash, multiple loads of laundry, bags of books to be donated, etc.]

Tuesday Jim and I went to Chicago to see my rheumatologist, who was visibly happy to see my reduced symptoms! (Weaning from all the meds will likely be a multi-year process.) I also had blood drawn there for a specialized lab that isn't available here in the hinterland. Thankfully the results show that I am negative for TB. Thank you, Lord!

Wednesday I made a big pot of vegetable beef soup. Yum! And my new loose leaf teas arrived! 

Thursday I learned that my brilliant and hilarious second cousin who had been on dialysis since the mid-to-late 80s (?) has his new body & heard, "Well done, my good & faithful servant." 

I also spent a lot of time on the phone, had a hair appointment, dropped off a trunk load of donations to my favorite thrift store, went to ALDI for a huge grocery haul, took one child to an appointment in town, etc.!  (And was thankful swim practice was canceled and that I had canceled the housecleaner!)

Friday I did dishes and laundry and more dishes and more laundry and made a bunch of phone calls to people to make sure they're doing their jobs (!). I made one of the two birthday cakes for the family party Saturday evening and gathered all the birthday party supplies. 

My week included interactions with the following professionals: nurse, immunologist's office, insurance company, pharmacy, specialty pharmacy, investor, tax guy, school principal, social worker, and probably more I am forgetting. 

Is it any wonder I am sleeping 8 hours or more most nights?!

IEP team

I had an IEP meeting this week.  Since attending my first one nine years ago, I estimate I have sat around the conference table at least a dozen times (and at least once on Google Meets), usually with quite a large number of professionals.  

Several meetings I have cried. At a couple meetings I have been on the receiving end of unkind and unprofessional comments. The first meeting was completely botched, and despite BK's diagnosis of hearing loss (which is an automatic IEP), the speech therapist was reticent to find him eligible. (She resorted to using his frequent drooling [as a 2 year old] as one of three supposed reasons she needed.) One meeting was handled very unprofessionally ("the worst one I've ever seen," according to an adjunct faculty member who teaches IEP prep at the university level & was my parent advocate at that meeting). For three meetings I have had parent advocates attend.  Very few meetings have been cut & dry. 

I try my best to look professional.  Well-groomed & well-dressed. Makeup & nails done. And jewelry. Those things don't affect the IEP, but they affect me, and I like to think it helps the team see me as competent. (This special ed advocate agrees.)

My Nozomi necklace (made from broken pottery from the Japanese tsunami). ♥️

The OT was on Google Meets and had another meeting at the same time, so she went first.  I was impressed that she had read the eye doctor's letter with suggested accommodations, and she deferred to the team, but said she agrees with the suggestion of using cursive writing (not just learning it, but incorporating it in schoolwork). Kudos to her!

The educational audiologist had another meeting to go to, so she went next. Her main concern had to do with behaviors in the past. Everyone sitting around the table was aware of them, and we all laughed (now) at the bad memories.  Thank the Lord things have changed, so it's a go for her recommendations. 

Then we got into the nitty-gritty. The team appreciated the fact that I had read all 31 pages of evaluations & suggestions which they had emailed me in advance. I assured them they did not need to read every word out loud in our meeting! 

The rest of the meeting was perfunctory.  And thankfully I was in agreement, and only had a few clarifying questions to ask.  The evaluations in all these areas show x, the suggested goals are y, the recommended accommodations are z, the new primary eligibility is abc, everyone please sign on these three lines.  The ELA teacher left for lunch. 

And then, as we were signing in triplicate, we had conversation.  I see these people more than I go to family reunions! So we chatted. :)

I asked about a different accommodation which we don't currently need but is on my radar. It turns out there is a simple solution which doesn't even involve an IEP. I enjoyed hearing the principal's report of daily interactions with our child. I told of my recent participation in a research project for parents of a child with an IEP. The team was impressed by the research & proposed project. We talked about how every parent is different. Some come in begging for an IEP for their child who does not need one. Others refuse an IEP for their child who needs one.  

I expressed my appreciation for all they do, and mentioned that I feel like I ask a lot. They assured me that I am advocating for my children, and that's my job. Amen! Jim and I are not young, and our children, who face extra challenges, need to be equipped to live in the real world.  May the Lord be pleased to use their FAPE (Free & Appropriate Public Education) to help them thrive to the best of their God-given ability in this life.

1000 Gifts, Vol. 7, #66

641.  beautiful October scenery - blue skies, bright sunshine, and golden stubble as fields are emptied

642.  two Saturdays in a row at swim meets - a combined 24 seconds dropped by BK & LM in four events

643.  answered prayer in so many areas that are not mine to share publicly

644.  a church that believes in prayer & lives as if we do

645.  Scripture journals (Seriously, check them out as a Christmas gift for that hard-to-buy-for person in your life.) Link to ChristianBook.com (The full set is 54% off for $125.)

646.  completing some home projects 

Still waiting on one item to be framed.  I was so happy to find the bamboo frame at Hobby Lobby!
I love reading Scripture in Japanese on my walls!

 

A variety ... our home states, a barn Jim's aunt painted, and one of my dad's barns that someone painted. A fort my great-great-something-grandfather built or lived at, and some photos taken by Jim's cousin.

647.  parent-teacher conferences

648.  opportunities to serve (albeit food; not classroom volunteering) in our children's schools

649.  an after-school club for BK

650.  options for so many services our children need; I keep thinking of the desolate places we drove through in Wyoming this summer, and while I know the Lord would provide, I'm thankful I only have to drive 30 minutes for services :) 

Thursday morning

It's only Thursday, but how about a week in review? :) 

Long weekend (because that's what our school district does best apparently) with a l-o-n-g swim meet on Saturday and a full day Monday (sleep in, trampoline park, errands, home, swim practice).

Second shift has been a real doozy Every. Single. Day. I'll spare you the details, but I'm racking up 100 miles a day. 

And social / emotional health has been a real doozy, too. I'll spare you the details, but we are mentally exhausted and on edge.

The window guys have been here at all hours.  I walked out of our master bedroom and heard, "Hello, Judith." I didn't even know which guy it was or which room he was in. But they're making progress! And it looks REALLY good! (They have had to build window frames for all our windows and sliding glass door.)

I lost my senses and signed up to take dessert for 40 middle school teachers and a crockpot of taco chicken meat for the elementary school (on the same day! - remind me not to do THAT again!) AND had two parent teacher conferences (for which I did not have childcare).  (And the window guys were here while I was baking ... and killing flies...)

I spent Awana again this week on the back seat of the van with a pillow and blanket and according to my Fitbit got an hour of sleep. I needed that.

I routinely put black-out dates on my phone ... and today, Friday, and Monday are black-out dates. The first item on my phone calendar on those days is "***No appointments***." :) 

Today it is nice (& necessary due to a new prescription) to be home (& without the window guys so far) and have margin to do basic hygienic things like change sheets, do laundry (& sort it), mop the kitchen, vacuum the living room. And we'll see, but I think I might hang things on the walls (things that have been piled in a corner of our bedroom for too long).

I will also peruse front doors on the Menard's website and consider if we will put window coverings back up ... and what they might be or look like. Hmmm. 

All in a Day's Work

{This was from a few weeks ago.}

Morning routine - wake up children, dispense meds, lead Bible time (on this morning when Jim was not here), school drop off

Dishwasher - check!

Laundry - check!

Appointment of the day - hair appointment in the next farm town

Phone calls - two from Mom's rehab hospital, one from Mom's physical therapist, 23 minute phone call with her insurance (which resulted in setting up yet another phone call in two days)

Emails - three from the schools, one to & from the hearing itinerant

Reference librarian request of the day - Are there any Christian special needs parent support groups in our area? (I provided a lengthy answer and several possible people with whom to network, but the basic answer is - I don't even know of non-Christian special needs parent support groups, and it could be very tricky for the parents to even leave their home to attend such a group.)

Did you see time for a nap in there? OR lunch?! Neither did I. ;) 

Reference Librarian Wannabe

My mom and her aunts frequently referred to themselves as frustrated teachers. While I don't think any of them had an elementary education degree, they ALL were excellent teachers, and found ways to teach (and teach WELL) in church, in Girl Scouts, in Bible classes, in women's meetings, in their family, etc.  [Note: they did have degrees in Library Science, Christian Education, Bible, and Nursing.]

I often refer to myself as a reference librarian wannabe.  In fact I blogged about it in 2008 here.  

Last week another adoptive mom asked me, "Do you know of any special needs support groups for parents in our area that are Christian?"

The short answer is no (there are a dearth of services in our area), but the long answer was ... long. :)  I referred her to three ministries, two churches, a special ed Christian school in a nearby state, and two individuals.

Who knows? Maybe she will gather enough info and resources to start a support group in our area for parents!

At a gathering a few days later a good friend asked, "Do you know K? I kept telling her about you and she didn't know who you are." I found K, and K said, "I've been thinking about asking the school to test my daughter for dyslexia." And ... our conversation was up and running! :)  

After explaining the process and asking a few questions, K doesn't think that school testing would be most helpful. But I was able to give her lots of information about the university testing services and explain in detail about the process, the people, and the price.   

One of our pastors is adjunct faculty at a seminary & has a special emphasis on the history of revivals.  When I learned about a new book, I was able to let him know.  

The Revival of Religion

Addresses by Scottish Evangelical Leaders delivered in Glasgow in 1840

He replied, "Wow! Definitely must read."

Our outreach & discipleship pastor is always looking for creative ways to encourage us to meet our neighbors. I sent him this idea I saw online.  Isn't this a great idea?!

I often lament that I have no ministry outside our home in this season, but the Lord is good to keep giving me opportunities like this to share info & resources and help others take the next step in their particular circumstances.  

What brings you to this part of town?

At 4.40 PM on a weekday, I ran into one of our pastors in the line at Panera. We were both surprised to see each other out of context, and he asked, "What brings you to this part of town?"

I wasn't really prepared to answer that.  Yes, I was 24 miles from home.  But, it's not unusual for us to go to town, and when we go to "town" (population: over 150,000), once we are there, we don't mind driving to another part of town.  (It's about 8 miles from the SW corner to the NE corner.)  It takes us 20 minutes (almost 20 miles) to get to the edge of town.  

Previous generations went to town once a week ... the closest, small farm town, that is!  I go to the 20-miles-away "town" almost daily and sometimes twice daily!! (Oil change in the morning; speech therapy in the afternoon for example.)

I am not sure what preconceived idea that that particular pastor has of my life, but, in case you are wondering, let me assure you that I am not feeding calves, driving a tractor, hoeing the garden, or canning beans.  I am transporting my children to services that don't exist in the country. 

(Thankfully our dentist, tutor, schools, grandparents, and swim team are within 10 minutes. But not doctors, ADHD pharmacy, speech therapist, audiologist, restaurants, or grocery stores!)

The Meeting

A few weeks ago I dressed professionally, wore jewelry, put on makeup, and even painted my nails.  None of that was necessarily essential, but I want to look professional whenever I go to "the meeting." 

This was the annual IEP meeting for LM.  IEP = Individualized Education Program

I had spent much time in the weeks leading up to the IEP meeting, researching, networking, praying, and mobilizing prayer. 

I had been quite nervous the day before, but that morning told Jim that I could tell people were praying.  And I came home exhausted (feeling like I had been through the wringer in fact), but thankful.  Very thankful!!  The only way it could have gone better is if the Lord had miraculously opened a Christian special ed school in our village! 

As a result of the meeting, the team:

• changed the reading curriculum they’re using with her (to UFLI, one on my shortlist of three I was hoping for), 
• increased her daily 1:1 special ed minutes for reading from 25 to 45 (she will continue to have 25 min/day 1:1 in special ed for math, and 50 min/day with a 1:1 aide in the classroom), 
• decided to do a phonemic awareness assessment & add a few more reading goals,
• strengthened her goals, assuming that she will make ambitious progress (more than 12 months progress in 12 months),
• kept her on the OT caseload to make sure she gets enough sensory breaks so she can learn, 
• more than doubled her speech goals to include ones that are communication-based (learning how to form sentences & questions) rather than just articulation (/l/, /r/, and /th/), 
• and added a few accommodations I asked for, including:
•  remote learning day (snow day) packets to be on her instructional level rather than her grade level, 
• minimizing the amount of time she participates in sustained independent reading until she attains mastery, and 
• not using the computer-based special ed instruction software during her 1:1 time with the special ed teacher.  

All of this is in addition to twice-weekly tutoring we provide, and a summer homeschool I am planning even now.  

If you know and love our sweet (& very capable, might I add!) girl, will you please pray that she will indeed make ambitious progress? 

I have a lot I could say, but in this public place, I will focus on gratitude & prayer. :) 

Prayer Meeting Workshop

A few weeks ago for prayer meeting, we had what felt like a wonderful literature course, analyzing and then comparing & contrasting a prayer from Valley of Vision and a liturgy from Every Moment Holy.  Then we had time to write our own prayer and pray it out loud if we desired to.  

Most of our praying is extemporaneous, but writing prayers out can be a good activity.  Do you write your prayers often? In different seasons of my life I have done so, but not lately, so it was good to be still and do so. 

Liturgy for a Tired Mom

Lord, you created families,

     and you created our family ...

           the miracle of determining the time and the place where each of us would live

so that we would seek God.

You placed us four, 

     with our very different personalities, 

          strengths, 

               physical limitations, and 

                    emotional needs 

in our nuclear family. 

I thank you for your creativity on display. 
I thank you for built-in opportunities to 

     show compassion,

          give grace, and 

                bear each other's burdens.  

You, O Lord, are the Father of Compassion, 

     the source of all grace, and 

         the ultimate burden-bearer. 

Forgive me for attempting to do it all. 

Strengthen my compassion,

     my ability to give grace and

          to bear burdens. 

When my children experience compassion, 

     grace, or 

          a lifting of their burden from me, 

help them see YOU! 

Give me your wisdom to know 

     how to respond in each unique situation ~ 

when to comfort and 

     when to correct,

when to instruct and 

     when to simply listen,

when to teach a lesson and

     when to teach by ignoring the offense and

          demonstrating the power of forgiveness.

Mostly, Lord, give my mind your rest.

Forgive me for fretting that I might make a mistake.

    (I have made & I will make mistakes.)

Let me walk in step with your Spirit,

     day by day and

          moment by moment,

that my words and actions may be filled with 

     your love,

          your joy,

               your peace, 

                    your patience,

     your kindness, 

          your goodness, 

               your faithfulness,

                    your gentleness,

     and the self-control that comes from you. 

May our family, 

     which you miraculously put together, 

be people who seek you with all our hearts 

     and find you.

For Jesus' sake, 

     Amen. 

Praying for Children with Special Needs

While each child, parent, family, and situation is unique, I have found bits and pieces of all of these to be helpful.  Do you know of any other resources which would be helpful?

The Every Day Prayer for Special Needs Parents 

https://www.sensoryfriends.com/disability-blogs/the-every-day-prayer-for-special-needs-parents 

Back to School Prayer for Your Special Child and Family

https://walkrightin.org/2022/08/22/back-to-school-prayer-for-your-special-child-and-family/

Praying Scripturally for Children with Special Needs

https://momsinprayer.org/get-involved/join-a-group/special-needs-praying-moms/pray-scripturally-special-needs/

15 Scriptures to Pray for Your Child with Special Needs

https://embracing.life/article/prayers-i-pray-for-my-children

1000 Gifts, Vol. 7, #17

1. better sleep (on average),
2. a swimming pool 5 miles from our house, 
3. a summer swim team only 20 minutes away, 
4. great coaches, 
5. a great season,
6. supportive coaches who helped LM conquer her fears and swim in her first swim meet
7. finding a rotation of snacks that works for us
8. {finally} finding a super-easy way to lock our snack cupboard
9. thinking through screen time, &
10. thinking through year-round swim team options (you should see my spreadsheet - ha!)

Summer Vacation, Day 41

Sunday, June 30th

Sundays seem to be focused times of spiritual warfare for families with young(-er) children. There were plenty of moments I won't record here.  

I have had more political conversations the past month than I have probably had heretofore in my entire life. So it was refreshing to hear our adult Sunday school teacher, a dear brother in Christ from an unreached people group (living in the USA on a green card) pray to the Lord, reminding Him of how He used Christ-followers from Europe & the USA to go to hard places with the Gospel, persevere through hardships, and reach his grandfather with the good news of Jesus Christ. And He begged the Lord to have mercy on our country that it will once again be a shining light to the nations.  Amen! 

After the worship service (3rd in a 4? part sermon series on Jude!), I met a woman visiting from Japan. It was such a joy to speak Japanese and interact with her.  She was impressed to meet someone here in the middle of nowhere who is a Japanese speaker, but she was much more impressed by adoption (culturally rare in Japan &, she added, Asia) and also by how much our children look like us. May God use our very brief encounter to propel her to have more contact with God's Word and God's people when she returns to Japan. 

Lunch with extended family at our favorite pizza spot. BK golfed with Jim & his brother.  I took LM to the pool and let the lifeguard babysit for 1.75 hours. Thankfully there was another girl in the pool to play with. 

We took supper to Jim's dad's.  My stand-by chicken enchilada casserole, rice, corn, veggie sticks, and my sister-in-law added delicious fresh pineapple. 

We stayed til almost 10 PM watching Olympic gymnastics trials, starting to learn French on Duolingo (BK & LM), and discussing everything from educational philosophy to missions fundraising to what God is doing in "closed" countries.

And just like that, 2024 is half over.  

"So teach us to number our days

    that we may get a heart of wisdom."

A Week in the Life of a Special Needs Mom ~ Part 2

After I wrote the post, "A Week in the Life of a Special Needs Mom," I wanted to add more.  Not more items on a list of things I did that week, but more about what was going on behind the scenes, specifically in my heart. 

I honestly do not remember the particulars of my heart during that particular week, but it's safe to say that I experienced joy, relief, sadness, grief, exhaustion, and much more.  I probably felt at the end of my rope.  And I probably fell into bed most nights exhausted.  I know I was immensely thankful for my Moms in Prayer group.  And also for "the Spirit [who] helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words."

For special needs parenting does not just involve more therapies, more phone calls, more appointments, and learning new and different ways of supporting one's children.  

Special needs parenting is a mental weight, an "extra" that is always on a parent's mind.  It seems like everything we plan or think about or discuss goes through a filter of "how will this work given the special needs involved?"

Special needs parenting is also a tool God is using in my heart, revealing my idols, my self-centeredness, my performance mentality, and the list goes on and on. 

Comparisons do not help, but come unbidden to my mind.  And they go both directions.  "Look how much easier it is for my friends whose children don't have special needs," and then the pendulum swings to "Oh, but remember so-and-so whose children's needs are so much more intense." Neither one helps. As Paul said, "Think about the things that are true..."

At the advice of a friend who suggested I make my social media look like my real life, and not a life I'm not living, my Facebook feed is filled with posts from groups for multiple diagnoses and learning disabilities, as well as IEP advocacy groups.  I have learned a lot, but I also go through seasons where I just unfollow all of them. 

My heart goes from "it's not fair," to "God is sovereign & loving," and from "this is hard," to "The Lord gives strength." I think it will be a lifelong journey. :)

I appreciated this prayer for parenting a child with special needs.  Maybe you will, too. 

@amishobaraka on IG posted

A Prayer For Parenting A Child With Special Needs.
“Praise to the God who caries no prejudice or partiality.”
📘 from @everymomentholy, Volume III

View this post on Instagram

A post shared by Sho Baraka (@amishobaraka)

A Week in the Life of a Special Needs Mom

Last week involved the following:

• one day of 6 phone calls trying to get 3 ADHD prescriptions fille

• + 2 more phone calls of confirmation the following day

• two phone calls with the nurse at developmental peds, moving an appointment up by a month

• a referral to another specialist

• 6 pages to fill out before the appointment can be made

• 2 pages to send to the classroom teacher (& then to retrieve from the child's backpack) for the pre-appointment packet

• a 30-minute zoom (following up on the previous week's 1-hour zoom) parent intake interview to start a new intervention

• driving 30 minutes to speech therapy one afternoon (weekly, according to the university calendar)

• investigating some specialized reading tutoring over the summer

• scheduling an audiology appointment for annual hearing test & custom swim ear molds

• troubleshooting with the audiologist regarding an echo coming from BK's hearing aids

• arranging transportation two days a week when one child stays an extra hour after school for math intervention

• attempting to register LM for tumbling (which will help with rewiring her brain) [This is proving a lot more difficult than I imagined, as it has to be done in person???]

• answering an email from the school saying that I will be at LM's annual meeting reviewing her IEP (both children's meetings used to be in April, but I think now we have one in the fall and one in the spring, which is actually helpful) [to read all prior posts about IEPs, go here]

• awaiting a 48-page report in the mail outlining (in detail apparently) the findings of global-psycho-educational testing for one child

As someone said recently, "You couldn't work [outside the home] if you wanted to."