Last summer, Julianna made lots of progress in swimming with Jenna, a girl who had just graduated from high school and was teaching swim lessons in her backyard pool. Julianna was able to go underwater several times, and attempt swimming from one side of the pool to the other. When she jumped into the deep end, she would literally sink to the bottom like a stone, and this worried me, greatly. She did not know how to naturally come up and swim to the edge of the pool, a crucial skill. But we didn't discover this until the end of our session, so there wasn't much we could do about it. And though she made lots of progress last summer, life goes on, and not being near a pool to practice ends up meaning she loses all her progress from last summer. We found this out in the last few weeks, while we've been swimming at our local gym's pool as a family a few nights a week. She will not go under water anymore, and the inability to come up from a deep part is very distressing to me.
So this summer we made a goal for her to work on just that one skill: be able to jump in a deep end, come up, and swim to the edge for safety. We've attempted this at the pool so far, but nothing. And so Joel and I knew we had to do more. It was time for her to learn to swim, once and for all, mostly because we wanted to know she would never drown in a deep pool, and also because she can't enjoy herself in the water. She misses out on so much fun because of this fear. I wasn't sure who to turn to for the right help, and then I remembered that her regional center case worker sent an email a few months ago about nearby swim lessons for special needs kids. I had read the email at the time, but none of them seemed right for her, so I disregarded it. But something told me to look at that email again, and as I scrolled down the list, one place stood out to me.
I went to their website, and found out that they offer private lessons for kids with all types of special needs, all ages, and they individualize it to each child's level. I called the director of the facility, and told her about Julianna, and she said they could definitely help, and that on the first day, the teacher would ask what I specifically wanted Julianna to learn during the course of the lessons. It sounded perfect. I was glad to know these teachers were specially trained to help kids like Julianna. I didn't even know this place existed until now, though they've been in the area for about 5 years. The only catch: it's a 40-min drive one way for a 30-min private lesson, and it will be Mon-Thurs for the next two weeks. I felt unsure about driving so far for just a 30-minute lesson, especially knowing that we are spending hard-earned money for this, not even knowing if it will work. Talk about a leap of faith! And then I remembered back to 5 years ago, when we had to do the same thing to help Julianna potty train. We found an ABA agency to come to our home, and we were willing to pay them out of pocket for potty training help, not even knowing that it would prove successful. A huge leap of faith on our part, but it turned out great. She potty trained. So why not do the same with swim lessons, another major life skill? A potentially life-saving skill?
So we did it. We paid for the lessons. We even signed Blake up for a group class at the same time so he wouldn't be bored in the hot sun while we were there. We will be driving 40-min one way, Mon-Thursday, for the next few weeks, hoping and praying that all our time, effort, and money will pay off, and that Julianna will finally conquer her fear and be safe in water. To say I am nervous is an understatement.
Raising children is sometimes about taking leaps of faith into the unknown, trusting that the decisions you make will bring good results, lasting results. Parenting is not for the faint of heart. It takes great courage and sacrifice.
I will update as much as I can as the swim lessons progress! Wish us luck, and say a prayer for Julianna. She needs this life skill so badly.
Sunday, July 19, 2015
Wednesday, July 8, 2015
Today I get to share a post written by Mandie, a good friend of mine. Her son, Drennen, is one of Julianna's best friends. They have known each other since they were babies, and sometime during the last few years, Drennen has decided he's going to marry Julianna. He is just one month younger than Julianna, and they even went to preschool together for two years until his family moved to the next town. We are still close enough to have play dates so these two can spend time together (and of course we had to include a few pictures of them). I admire Mandie's mothering skills, and she has a beautiful, fun family. Her parents also live close by (Drennen's grandma is Julianna's primary teacher) and I love them as well. They go places all the time and love to be together. So read on to learn about Drennen, a very special boy.
Tell me a little bit about your family.
I’m Mandie, and my husband is Don. I have six kids at home, and two step daughters that are now grown with husbands of their own. Katia is 16, Drennen (Dude) is 11, Karmen is 10, Devin is 6, Dallin is 3, and Dean is almost 10 months.
How did your pregnancy go with Drennen? Were there any complications? How was the delivery?
Drennen was prayed for, expected, and waited on. We were trying for almost a year when we got pregnant. I was in the hospital 3 times for preterm labor caused by an unknown UTI, each time receiving all that they give to stop contractions at 10, 20, and 34 weeks. At the 34 week one, no one checked me. They kept me overnight, got my contractions stopped and sent me to see my doctor the next day. When I got into his office and he checked me, he asked if I was peeing! I was HORRIFIED! I almost cried, and immediately started apologizing. Turns out it was amniotic fluid! He told me I couldn’t go home, but had to go to the hospital. This was 12 years ago, so instead of voicemail we had an answering machine. I called Don, who worked nights, screaming into the phone to wake him up, telling him I was going in! The people in the parking lot thought I was nuts!! “Don!! I’M GOING TO THE HOSPITAL, WAKE UP!!” I had a viral infection at the time and the doc didn’t feel comfortable with the risk of infection due to the bag of waters being broken for an unknown amount of time, so we did a c-section. Not my best, most-informed decision, but that’s for another blog!
In the delivery room, Don put on gloves and went to work; this was a place he was very used to. He had been working in the NICU, going to c-sections and high risk deliveries as a respiratory therapist. Drennen was very floppy, but breathing well. Since he was 35 weeks and I had an infection they kept him in the NICU for a week. He did get jaundiced, and we spent about a day dealing with that as well.
What was Drennen like as a baby and toddler? When did you start to notice that something might not be quite right?
Dude was an easy baby. I dismissed his early delays, thinking it was because he was a preemie? A boy? I’m not sure. It didn’t last long. He was born in late January, and in June, a little more than 2 weeks after his well-baby visit, he had a seizure during family home evening. Everybody watched it. I called some trusted friends of ours and they all said get a good night's rest and watch him tonight, calling the pediatrician, neurologist, etc in the morning. I slept with him in my arms that night, and woke up to him having a grand mal seizure. I slid out of bed and on my knees, and Don watched to be sure our son was breathing. We took him to the hospital, and it’s a weird thing in the hospital with seizures: they would keep saying “suspected” seizures unless they could prove it. It was condescending. My husband worked there; at the very least he knew what a seizure looked like. So I sat there for an hour or more being dismissed until he had another one. I’m so grateful for that! Sounds weird but being validated and believed (and fast-tracked to the EKG, head CT, and EEG) was a good thing. We found out he had a slow heart rate, but it wasn’t the cause of the seizures. They told us to follow up on that later. So now Drennen had seizures to deal with, and the medicine was very hard on him. It made him drunk, twice a day. Because I had to dilute the medicine in bottles, he was getting 2 bottles a day, plus using a cup. He stopped nursing by about 9 months. I guess he was always delayed. He wasn’t sitting up until 6 months, didn’t pull to a stand until almost a year and didn’t walk until his sister was already here at 18 months. Because of the seizures, we started to get contacted by the regional center, and had people coming to the house for him every week.
A page from Julianna's preschool book from Drennen. Aren't they adorable?
When did Drennen receive a diagnosis? How did this make you feel?
When he started preschool, he went into the autism class. He did better there. They said they didn’t think he had enough of the delays or symptoms to be autistic, but I went to a neurologist and they said it was pretty clear. They said it was very “mild,” whatever that means. It was a shock, but only a little. If he’s in the autistic class and doing autistic behaviors, it was just a logical step.
In what ways have you seen Drennen progress and develop skills? How have you been able to learn how to care for him? When did you decide to homeschool, and why? How have you seen this help Drennen?
Drennen definitely learns by doing. He hates reading and writing, and school is, well it’s a nightmare some days. I decided to homeschool after an IEP in his 2nd grade. His teachers told me they wanted to put him the whole time into the Special Day Class, and I asked when these kids got the opportunity to “catch up”. They told me they were just lucky if they graduate. That and I asked his special ed teacher for Kinder and first grade how she liked the older kids she got this year, as she was moved to 4th and 5th, and she told me “They’re just older nosepickers!” At this time I was volunteering in their classes regularly and I knew that Drennen had very little time with the teacher. They had them set up in stations and he spent 15 minutes with the teacher one-on-one in math, and reading, but the rest of the time he was with the aides, or using flash cards, or playing games. I also started looking into other things for him and found a wonderful teacher that did a reading class over the summer. She did a Lindamood-Bell approach and it REALLY worked for him!
What is the most challenging thing you've been through with him? How has this changed you as a mother?
Remember that slow heartbeat I talked about earlier? Well one of the biggest struggles we faced was that becoming complete heart block. From age 3-6 we monitored and waited. His nighttime low rates dipped in the 40’s and we could have still waited, but decided to go ahead with the pacemaker surgery before it was an emergency. I waited until after his 6th birthday. So now he has a little scar, and to be honest, at the time from 3-6 he had stopped having seizures and I was completely focused on heart problems, but now we think about it very little (except with magnets).
What is Drennen like now? Has he surprised you in any way in what he's been able to achieve? What are his interests? What are some of his strengths?
Now you’ve asked about strengths… and this is where I get a bit weepy. I see progress that other kids have made and I’m so jealous. There were two other boys born around Drennen that I compare him to. One was a preemie that stayed in the hospital for more than a month. He was born very early, and I don’t remember how long he stayed, but it was a long time, and another little boy, also born early, ended up being diagnosed with autism also. Both those boys are doing amazing. Very smart boys, tons of friends, socially active. I know this is a spectrum disorder, but he got none of the “positives.” He can’t count cards, or memorize facts, he doesn’t excel at math, he loves cars, but hasn’t memorized all the makes and models of the 50’s and 60’s cars (which is the only ones I can start to help him with). The best thing we did was buy him a “learn to fly” lesson. It’s the only place he’s been so quiet and concentrated! My parents went up in the plane with him and he buzzed by our house. When he did, Daddy waved from the ground. We asked him if he saw the house and Daddy, and he said, “No I didn’t look.” "Why?! “I was busy driving the plane!”
Everything comes with great effort and difficulty for Drennen. I’m honestly not sure what the future holds for Dude, but I know he will get there one step at a time. He, however has his future planned out. He’s going to work at Disneyland; this week he is going to be working with the "Paint the Night" parade, last week he wanted to drive the tram. He will marry Julianna in the San Diego Temple (he has her dress described to me and colors for the wedding.) The reception, it has been negotiated, can be at our house, as long as I get the yard finished by then! And he needs lights strung across the basketball court. I’ve negotiated for dancing, and I’m teaching him how!
What is your favorite thing about Drennen? What do you want others to know about him? What does he want others to know?
When I asked him what he wanted other people to know about him we had a frustrating conversation about his job at Disneyland.
Me: Drennen, what do you want people to know about you?
D: About my Job.
Me: What job?
D: At Disneyland.
Me: No, if I handed people you met a letter that talks about you, what would you say?
D: That I like to work.
Me: What kind of work?
D: At Disneyland.
Me: No Dude, you don’t have a job there yet. Ok what do you like to do?
D: Go to the park.
Me: What park?
The kid’s got a one track mind!
How has raising him changed your perspective on motherhood? What would you tell other parents who are just starting on this journey?
My advice to parents? I wish I could impart some advice that would make it all easier! It’s frustrating, and not pretty. It’s often embarrassing (and now we don’t let Dude use the public toilet by himself), it’s funny (see conversation above), and you should always get out more. I’ve had a standing date with my knitting needles and a group of women for something like 6 years now. It keeps me just this side of sane. Therapists are too expensive and don’t get my sense of humor. Get help where you need it (a great big shout out to my cleaning ladies!) So basically take care of yourself and your relationship with your spouse. Find something to do that isn’t child-care related that brings you joy and make time for that. Cry behind closed doors—it scares the children.
And I’ve gotten through this whole thing and not talked about the spiritual side of my life. Here is a fact. Most the time, day to day, Drennen is more of a drain on my spiritual bank account, but when he makes a deposit, it’s a big one. And it makes a lasting impression on me. His baby blessing said in part that Drennen will face struggles in his life, but essentially he will be ok in the long run. I cling to that sometimes. The promise that it will all work out. I pray that he will be able to serve a mission. I know there is more than one way to do that, but I hope he gets the chance to go somewhere in the “field” to do the Lord’s work. And of course I pray he marries into a good family, maybe even someone we know ….