So John started a new job in December. It has been a much-anticipated change and move for him with less stress and more money after many, many years of working 60-70 hours a week, virtually unnoticed and unappreciated by his former employer. We had been praying for a position and company like the one that came along for quite some time when God finally opened doors and moved mountains to make the transition a reality and a smooth one.

But along with a new job comes new insurance. Special needs parents' biggest nightmare is the what if's of the new coverage, the hassle of letting every therapist, specialist, and doctor know, and wondering what will and will not be seen as a pre-existing condition.

With John's former job we had Cigna. Cigna did not cover ABA therapy at all and so Jeremiah's secondary Medicaid picked up the bill. We assumed that would be the case with his new insurance, BCBS Anthem. 

We found out yesterday that BCBS Anthem does indeed cover ABA and so his therapy will have to go through the primary insurance before Medicaid will pick up any balance. Jeremiah's current therapists are outside of their network however. We can go outside of the network to continue using them if we want...if we want to meet the $9,000 annual deductible for the coverage first! Oh, and by the way, because we did not get John's new insurance cards until midway through December and wrongly assumed his coverage would be similar to Cigna's, we racked up $4,500 in ABA therapy out-of-pocket for Jeremiah those first few weeks in December. 

Enter hyperventiliation and hysterical tears. Breathe. I didn't even know how to respond when they called to tell me all of this. I hung up the phone, proceded to run my errands, and slowly absorbed the realities of this new dilemma. When I got home, I was so distraught I could not even tell John. Poor guy must have thought I wrecked the van or ran someone over while I was out by my demeanor. I handed him my phone, dialed the ABA company back and let them recount all they had told me since they could do so calmly and without sobbing uncontrollably.

My husband immediately jumped into action. He called his new HR and told them what was happening. The open enrollment period to make changes is over, but they encouraged him to put his request and explanation for it in writing and they would see if an exception could be made. John spoke to his immediate boss who said she would do what she could on her end as well. If they make an exception, we will drop Jeremiah from the BCBS and he will just have Medicaid and still be able to receive his ABA. It will mean paying out-of-pocket the few doctors he sees who do not accept his Medicaid, but they are father and fewer in between than the ABA...and quite frankly, not as necessary. If not...well...

He will lose the "family members" Liz and Bryon and the rest of the ABA gang have become for him over the last several years. He will have no support in school, which has proven catastrophic in the past. What does that mean for us as a family? Well we have a few options.

1. We can encourage him and stress his poor teacher by letting him finish out this school year without support and graduate him in June. He will be 18 in February so that is not impossible. He does still have four more years he can technically attend his school however to get all of the learning, routine, and socialization he can from the experience and so graduating him early would be a very real disservice to him. 
2. I can start attending school with him on a regular basis to be his support.
3. We can pull him out and I can resume homeschooling him...which I can also technically do over the next four years even if we graduate him the end of this school year.

I know a day will come when he will age out of school for good and be home 24/7. We know there are adult day and vocational programs we can look into when that time comes. We just weren't prepared to start looking for them so soon. And because of Jeremiah's develomental delay, he is way too immature to go that route just yet.

On top of the decisions the BCBS determination is riding on, we still owe $4,500 for ABA for the month of December. So much for the increase in pay for John at this new job. Why does it always seem to be two steps forward, three steps back...in so many areas of our lives? Very frustrating. 

Trusting God. This didn't take Him by surprise though it took my breath away. He is still in control, still on His throne, and still working ALL things out for our good and His glory. Pray for us friends!

UPDATE: We heard from BCBS and they are dropping Jeremiah off as of January 1st. So he will not lose his ABA and will still have support at school when he goes back next week. We just have a new $4,500 bill. I'll take that over no ABA anyday.

​St. Augustine, Florida...oh how we love this old city. John and I went there on a mini vacation before we ever had children and we have been going ever since. During my homeschooling years, John and the kids would pick me up from the Florida State FPEA Homeschooled Convention and we would go straight to St. Augustine for a mini vacation. Every year. 

We walk George Street, eat great food, visit the old fort, the lighthouse Museum, the old schoolhouse and jail and more. We swim in the hotel pool, stay up late, and sightsee til our hearts content. 

About four years ago we decided to camp in St. Augustine. We spent about four or five years camping every spring break with church friends. We would all grab sites next to each other, cookout, hang at our campfires, and let the kids play til they dropped. No electronics or TV's or distractions...just fellowship with friends and nature.

Well about four years ago, we inadvertently packed an extra entity that  turned our camping trip sour and tainted our last memories of one of our favorite places on earth. Puberty. Dear sweet baby Jesus, I think even the raccoons were scared to come near our campsite. Our friends were all sympathetic and tried compassionately to help us with Jeremiah, but there was no taming the ball of hormones that brought out the beast within. Seriously. I am not exaggerating. It was that bad. Unlike previous trips to the old city, we could not wait for this one to end. We all just wanted it to be over so we could escape the stares and embarrassing attempts to regain control of all we had obviously lost control of. In the end, I just cried.

Well, John just started a new job in December and he already had two personal days he had to take or forfeit by the end of the year. So we decided to take a long weekend and go to St. Augustine. Redemption! God's grace abounded and we had the best weekend. Ben said it was one of the best mini family vacations we have ever been on. Even the drizzly weather did not spoil our fun. We crammed so much sightseeing and adventure into three days! 

We walked for miles, went on tours we had never done before, like the Whetstone chocolate factory and the San Sebastian Winery. We toured the Flagler College campus, visited several art galleries, ate great food, and Jeremiah even got to enjoy the hot tub a few times. Jonathan's fiancee Kaitlyn even went with us and it was just awesome. We were sad to see it end and are even talking about going back again next year during the same time, just after Christmas. The lights and decorations were just breathtaking. 

Best of all, Jeremiah did fantastic! God is good. He is merciful and gracious and a God who restores the years the locusts have eaten (Joel 2:25). Here are some pictures from or whirlwind weekend.

With Jeremiah rapidly approaching his 18th birthday, we have been seeking legal information on guardianship, transferring him from his pediatrician to an adult doctor, and getting him his Florida ID card. He had one so he could learn to use his debit card when we first opened his checking account, but he was twelve then and the ID expired last year.

Finally got him in for a new one and the timing could not have been more perfect. In July, Florida joined several other states in recognizing those with specific medical diagnoses by placing a designation on the front of their ID cards (and driver's licenses). See the "D" in the lower right of Jerry's ID? That stands for developmentally disabled.

Why is this important? Well, as an adult soon, there may be times when Jeremiah is not with us, practicing his independence. Were he ever questioned by authority, because of his lack of eye contact, communication, and social skills, he may appear rude, non-compliant, or even under the influence. Upon checking his identification, an officer or other authority would see that he is developmentally disabled and contact his next of kin, which is currently me on file with the DMV.

​I love that they are doing this. It just gives me peace of mind. You can visit this site for more information or to find the application that a doctor needs to fill out and sign to obtain this designation on yours or a loved one's ID/license.

Ok, so I totally should have uploaded this before my post about Jerry getting baptized, but I just stumbled across this video that I had published to an old media site literally years ago...as you can see by Jerry's age and size. This was Easter after the resurrection egg Sunday school lesson Mrs. Kim taught him. He is so visual and learns best when he can see and touch whatever it is he is learning about. I love how sweet and innocent he is retelling the story in his own words! Precious!!!

We love this watch! This is a visual schedule watch that you can program through an app on your phone, sync, and then pictures will pop up and the watch will vibrate on the child's wrist to let them know it is time to do something.

I have lunch and bathroom breaks at Jerry's school scheduled, as well as chores and self-care skills that he needs to do at home. It's great because Jerry doesn't need to read to use the watch. The pictures are pretty basic, but you can pay for more detailed photos or the option to upload and use your own. You can add as many tasks as you want, including the times of each class at school to help them transition better.

It's great for learning and keeping routines. It fosters independence and responsibility and even tracks physical activity. At the end of the day we just put it on the charging base and let it charge until the next morning. It has become a part of Jeremiah's morning routine to put the watch one when he gets dressed everyday.

The watch is for ages 3 and up, but we did find the band a bit small for Jerry's wrist. Thankfully, we have a friend at church who makes leather bracelets and commissioned him to make a new band for the watch that would not cover the charging link on the back so it would still be able to connect to the charging station. He also put these great name plates on either side in case Jeremiah ever lost or misplaced the watch so it would hopefully be returned. The band snaps closed.

Love this new technology for our kiddos!

I ran across these pictures the other day on my old Photobucket site. I remember this day. Jerry had previously expressed an interest in being baptized. He had seen others go before him and he had learned in Sunday school all about Jesus's death and resurrection.

I talked to Pastor Billy. He spoke to Jeremiah to see what and how much he knew and comprehended about his salvation and being baptized. He felt confident that Jeremiah had as clear a grasp on it as God had given him and so it was decided.

This event and these pictures are what sustained me through some very difficult and dark days during Jeremiah's puberty years when aggression was at an all-time high and we were living minute-by-minute, trusting in God's sovereignty, His will for us as a family, and His eventual deliverance from those times.

Here we are on the other side of those years. I can see how God used them in so many ways in each one of us, especially Jeremiah. I will always wish there had been a different way to learn those lessons. The scars still run deep though the wounds have healed. But I also still trust that God knew what was the best way for us to be refined. And that was one hot fire!

Now I look to Jeremiah's fture and all of the uncertainty there. Will he be able to hold a job and make some money to maintain some level of independence? What will happen to him when John and I can no longer care for him? Will he learn to count money, to read, to do all of the basic life skills  and self-care skills necessary to get along day-by-day? 

And then I stop. Because the truth is, not knowing the answers to all of those questions and more scares me to death. I trust God with his future, but my momma's heart still wants to know that he will be ok, taken care of, loved. But all of that is in the here and now, on this earth, in this realm, in these tents we call bodies.

The only thing (and most important thing) I can have assurance about and that brings me peace when the crazy train of thoughts in my head derails, is Jeremiah's eternal future, his ultimate destiny. And these pictures remind me that it will be in heaven with his Savior, in a completely healed body, with a completely healed mind...no speech impediment, no poor fine motor skills, no developmental delays, no hallucinations, no diagnoses. 

And that...despite my fears, is ALL that matters.

One of Jeremiah's not-so-fun summer memories involved his battle with ingrown toenails. He has struggled with these on and off for the last year or so. By the time we noticed one forming, it was weeks into the process and already infected. Jeremiah has a pretty high pain tolerance and he never told us his toe hurt.

Sometimes I could get them out with just clippers and peroxide, but twice we had to take him to the pediatric after hours ER to have his toe nummbed and them cut out. He handled it better than we did! Seeing them cut down his nail bed to remove the nail and then getting the bill for $200 per toe was very painful indeed!

We waited until school was out and then took him to a podiatrist to see about taking care of the ingrown nails for once and for all. On our initial visit, where I thought we would just be meeting the doctor and he would be assessing Jerry, he proclaimed that he was going to permanently remove the outsides and insides of two toes on his one foot...THAT DAY! And so we decided why prolong the inevitable and build on the anxiety and we went for it. It only took about twenty minutes or so from beginning (prep and numbing) to end (wrapping and getting aftercare kit).

I had this procedure done when I was about fourteen and it was much more barbaric with a much longer recovery time. Back then, they cut into your toe near the cuticle to remove the root of the nail. Today they simply apply some liquid to burn the root near the cuticle so it never grows back. And I had to wear open-toed shoes for months after the procedure and soak my foot a few times a day. Jeremiah had no such instructions. We could soak it for the pain if it made him feel better, but he didn't have to in order to keep it clean and from infection.

Four weeks after the first foot, we went back to have the two toes on his other foot done. He was such a trooper. The worst was the first 24 hours after the procedure. Foot #1 taught us that we really needed the doctor to call in something stronger than just Ibuprofen for him since every pain is so much worse at night and that's when the numbing shots wore off. There was absolutely no sleeping that night. He was miserable. He couldn't lay still because of the pain and so he paced, which of course made his toe hurt even more. It was pathetic. I called the doctor at 6 am the next day and had him call in Tylenol with Codeine. After his first dose, he finally fell asleep and slept the majority of that next day. Thankfully, we had enough of the Rx left over for the second foot and began giving him the meds as soon as we got home from his appointment. We stayed on top of it all night and, by the next afternoon, he was med-free and good to go.

The worst part of the healing process had to be that he couldn't go swimming for three weeks after each foot. That was pretty much the majority of his summer, but we made the best of it and squeezed in a few Adventure Island days when we could.

I am sad to say that now another toenail on his one foot is becoming ingrown on both sides and so I fear another trip to the podiatrist is in his future. We likely won't be able to wait until next summer to take care of it so may have to plan it for a Friday afternoon so he has the weekend to recover before going back to school on Monday.

Over the summer I stumbled across someone's post about person-centered planning, which I had never before heard of. It was specifically in regards to special needs individuals. They are also called one-page profiles. Basically, this is a one-page (single or double-sided) profile about your loved one with special needs. It can contain any information you feel would be important to know about them if you were going to be working with or hanging out with them. You can give it to principals, new teachers, therapists, babysitters, other parents, doctors, etc... 

We all know that each child is unique in and of themselves, but even more so when they have exceptional needs that set them apart from their peers. You never know when the color of your shirt, the temperature of the room, the dog barking outside, or asking them to read you a sentence or work an addition problem might cause an adverse reaction...a/k/a a meltdown of epic proportions. Anyway, this profile page sort of takes the guesswork out of getting to know those and other important factors when someone new is working with your child.

Jeremiah is a complicated fellow to say the least and so his profile page is double-sided. I included his likes and dislikes, what works with him and what doesn't, his medications and diagnoses, our goals and hopes for him, and our contact information. I used Microsoft Publisher to make it, but you could use any Word-type software. I am pleased with how it turned out and think it will be a great resource for the future. I already gave one to his new teacher at open house the other night. She was very appreciative! Hopefully, it will help her to avoid some behavior issues in the classroom this year.

You can theme your child's pages as well. Jeremiah has been into all things related to the mail lately and so that's the theme I made his. The best part is that I can change the theme or the information on his profile anytime as he grows and matures and his interests change.

Here is where I first learned about the person-centered planning and here are some one-page profile templates you can download for free to get started. They are also on the resources page of this website. Please feel free to share this post and these sites with any others you think may be interested or benefit from them.