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.

Today starts Jerry's 10th grade school year. In praying for a successful one for him and his teachers and friends, I began reflecting on his last year. We changed schools mid-year, just after the Christmas break and it turned out to be one of the best decisions for him. He did a lot of maturing and growing the second semester of 9th grade. He made friends and was social and even began reading...FINALLY! Here are some pictures from the second half of last school year.