Some People Don't Get It, Some Never Will

I have moments that aren't pretty. 

I am a Christian. My faith guides me in forgiveness and turning the other cheek. It gives me a moral compass for situations that are tricky. I try to do my best, but I am human. I can get offended or angry by someone or something. 

I try to keep my blog positive, because I am positive most of the time. Even if the positivity is real, I have moments.

I love my family. I enjoy my life. We love what we have, but sometimes life is hard and exhausting. We don't live like everyone else.

Jaycee needs medications and machines every day to be healthy and live. It's not fun but we have a routine. She sees six or so specialists for her conditions, which means several times a year we're running to appointments and waiting a ridiculous amount of time to talk to a doctor for a short amount of time. Then there's the few hospital admissions for illnesses every year because of Jaycee's lung problems. These parts of our lives are messy and hard, but there are many good times. We have made life work, and it's fine. I'm not sitting around feeling sorry for our family. Life can be hard at times for me, just like anyone else. 

Do you want to know what makes life harder sometimes?

Other people.

I suppose at times I want people to treat me with some extra sensitivity for my situation. I want them to think before they speak. I want them to see the bigger picture. I want them to understand how I view the world because of my experiences. Some people do. I love those people.

Other people just don't get it. Any of it. They don't understand the stress I deal with on a normal day let alone on a day when my child is sick. They don't want to step into my life for a second and understand my perspective. They make assumptions and judgments about my family they believe is true, but they don't understand.

I know you must be trying to figure out these mystery people and what they say, so I'll share a few examples.

Let's start with doctors. One of Jaycee's specialists never seems to get the full scope of her situation. One time, Jaycee was in the ICU for 3 weeks for ARDS, septic shock, and respiratory failure. She was on a ventilator for almost 3 weeks and on maximum support of an oscillating ventilator much of that time. She nearly died. That isn't me being dramatic. The doctors in the ICU offered to call in family members and clergy for us because they didn't think she'd pull through the first few days she was in the ICU. It was the most stressful and scary time in our lives.

After Jaycee recovered (which by the way was long...she could not walk when she was first discharged and depended on a wheelchair), we met with one of Jaycee's specialists to go over her progress since discharge. I mentioned that the hospital stay was scary because she almost died.

"She didn't almost die," the doctor said in an annoying voice.

"Well, she was on full support of a ventilator and barely held on several times," I replied.

I don't remember the doctor's next remark. Really, I don't remember anything else about the appointment. I was upset. I had just lived through hell with my kid in the ICU and this doctor, who should have known better, acted like Jaycee had lived through a simple scratch on her knee.

The doctor didn't get it. You think this person would have but nope.

A few years later, this same doctor seemed confused when I told her that I was having trouble getting Jaycee to appointments. Jaycee was completely scared of the hospital and refused to enter it. She was afraid she would be admitted and subjected to tests and pokes and pain. She had a long history at the hospital, and she was not going to voluntarily walk in for routine appointments.

The doctor asked me, "Why would she be afraid to come to the hospital?"

Really? Of all people, this doctor should know considering this person had seen her in ICU a few times hooked up to all sorts of stuff. But, the doctor didn't get it. The doctor didn't understand how the physical impacts her mental and emotional.

Doctors aren't the only ones to frustrate me though. People outside the medical world don't get it either.

There was a time when Jaycee was a year old and not walking, as completely normal for Down syndrome. One super person said, "I think she has first child syndrome, and you don't make her walk. She could walk if she wanted to."

Really? That person didn't get it! The person didn't understand that low muscle tone with Down syndrome delayed her development. Nor did that person appreciate the fact that Jaycee had physical therapy every week since she was 2 months old to help her be able to achieve things like walking. I sure had a good cry after that comment as this person seemed to think Jaycee's delayed walking was somehow my fault. Even though I knew it wasn't true, it still hurt.

Just one more story for you. Recently, I explained to an acquaintance how Jaycee injured her knee and why she was walking funny. I mentioned that it took me several hours to determine she was hurt because I took her refusals to get up and move as a behavioral issue (it's a common response from Jaycee when she's overtired). To which the person replied in a condescending voice, "Well, aren't you mom of the year?"

"Well, it's hard to know your child is hurt when they don't say much," I replied.

Thanks for calling me mom of the year though. I was only up several times that first night checking the video baby monitor in her room, checking on her physically a couple of times, and beating myself up for not catching her injury sooner. The criticism wasn't helpful. That person didn't get it either.

People say things without thinking sometimes. When I'm upset or in rage about a comment, I can eventually hear the gentle voice of God whispering truth to me. I am guilty of saying hurtful and insensitive remarks to people. I'm not perfect, just like anyone else. Sometimes, things fall out of my mouth that I wish I could take back. I need grace too. Because of that, I will extend grace to others who hurt me.

Even if people don't handle me with the gentleness and understanding that I desire, I will still forgive and move on. They deserve the same grace I want to receive from others. It's hard to forget hurtful words and people who say them, but it's important to move forward and accept that fact that some people will not understand my life. Maybe one day, they'll be willing to listen and hear my story and perspective. I hope I can do the same for them.

More Prayers for Lungs

A couple of years ago, I wrote a post called Prayer for Lungs. It was a simple post written while my daughter was battling a respiratory event. I shared two verses in the Bible that I used in my prayers for her. In the past year, this post has been read every week by multiple people. It was written while I was tired and stressed, so it was short and sweet.

Today, I thought I would share more on this topic of prayer and lung issues. I have combed through the Bible in the past looking for scriptures to pray over my child. On a daily basis, Jaycee has interventions for obstructive sleep apnea, asthma, and a poor cough response. A few times a year, Jaycee is admitted to the hospital for pneumonia or a virus attacking her lungs causing her to need oxygen or higher support. As you can imagine, I have prayed many prayers for Jaycee's breathing and lungs. Below you'll find scriptures and sample prayers I say. I hope these help you in your situation.

²¹ So Jesus said to them again, “Peace to you! As the Father has sent Me, I also send you.” ²² And when He had said this, He breathed on them, and said to them, “Receive the Holy Spirit. ²³ If you forgive the sins of any, they are forgiven them; if you retain the sins of any, they are retained. John 20:21-23

God, you have given many good gifts to your children. Just as you breathed onto your disciples, I ask that you breathe on my daughter. Give her a sustaining breath. I ask that the Holy Spirit minister to her while she's sick giving her reassurance and strength. Amen!

Thus says God the Lord,

Who created the heavens and stretched them out,

Who spread forth the earth and that which comes from it,

Who gives breath to the people on it,

And spirit to those who walk on it:

Isaiah 42:5

God, you are the one who put breath in our lungs. But, the enemy is trying to destroy my child's lungs and steal her breath. I ask that you heal her lungs and help them function as you intended them to function. Give her breath that sustains her life. Help her oxygen levels to be normal. Let all the mucus, viruses, and fluid leave her lungs. Allow her lungs to function perfectly as you created them to be. Amen! 

⁴ Again He said to me, “Prophesy to these bones, and say to them, ‘O dry bones, hear the word of the Lord! ⁵ Thus says the Lord God to these bones: “Surely I will cause breath to enter into you, and you shall live. ⁶ I will put sinews on you and bring flesh upon you, cover you with skin and put breath in you; and you shall live. Then you shall know that I am the Lord.” ’ ” Ezekiel 37:4-6

Father God, Your word shows you can give life giving resurrection power. You miraculously gave breath and life back to the dry bones, so how easy it must be for you to give breath to my child. I pray that the same power flow through my daughter, healing damage, removing sickness, and allowing oxygen to flow normally. Let breath enter her supernaturally, and let her lungs work normally. Let this sickness be finished, and let her live. Amen!

¹⁷ For how can this servant of my lord talk with you, my lord? As for me, no strength remains in me now, nor is any breath left in me.”

¹⁸ Then again, the one having the likeness of a man touched me and strengthened me. ¹⁹ And he said, “O man greatly beloved, fear not! Peace be to you; be strong, yes, be strong!” Daniel 10:17-19

God, You must know my daughter is sick and tired. She has no strength left, even to breathe on her own. Just as you helped Daniel, help my child. Give her strength and breath. Help her lungs to work properly. Let none of us fear at this time. Let the diagnoses, the struggling, and the many interventions that are happening not create fear in any of us. Let us walk in your perfect peace and strength. God, you can do so many things when we ask and seek you. Lord, I'm asking for your help in our situation. Give the supernatural healing to my daughter's lungs and bring peace to her mind. Amen.  

My Ironic Life

"Did your daughter get you interested in this profession?"

I've been asked this question a few times over the years when people discover I am a pediatric speech-language pathologist and mom to a child with Down syndrome and a severe speech and language delay.

"No," I tell all those who ask. "I worked as a speech-language pathologist (SLP) for two years in the school setting before I had my daughter. After she was born, I went into private practice focusing on kids birth to age 3 for more flexibility."

I get why people may think it was my daughter who inspired me to help other children like her. It would seem really ironic if it happened the other way around, but that is how it happened.

My first baby was born with Down syndrome and a heart defect. I was new at motherhood, and I had much to learn in general and especially with her diagnoses. When she was born, it was early on in my career, and I was refining my knowledge there too.

I have now been Jaycee's mother for 12 years and working as an SLP for 14 years. You may wonder what that has been like for me.

Honestly, extremely helpful and, at times, extremely difficult.

In one respect, my training and education has been beneficial. When Jaycee was gagging on solid foods and textures as a toddler, my feeding education was invaluable. I don't know how I would have survived those months without that knowledge. That was a stressful time for both of us, but she made progress and achieved a regular diet by age 3.

With my professional knowledge, I knew what to do to help my daughter's low muscle tone in respect to her tongue protrusion, drooling, and feeding. I purchased chewy tubes, massagers, and gathered up other supplies to exercise her lips, cheeks, and muscles in the face. I knew how to help her, but Jaycee often didn't want my help. I found it very frustrating. I successfully treated other children with these same tools and approach, but she refused to work with me. I should have left it alone, and I eventually did as I passed the items on to the speech-language pathologist who was getting paid to treat her.

As common with Down syndrome, her language was delayed, but I knew how to stimulate her language and what milestones were important. When Jaycee needed to learn sign language as a toddler, I already knew several signs and had experience teaching toddlers how to use sign language. That made it so much easier! I had confidence that I could help her, and she flourished in sign after age 2.

Achieving milestones was a long process for her like any child with a developmental disability. As a therapist, I knew the milestones too well. I couldn't shut that part of my brain off. I couldn't stop thinking about the next skill to develop. All the toys I purchased for her early on had a milestone in mind.

My professional brain just couldn't appreciate what Jaycee was doing as a toddler because I was too focused on what skill was next. My perspective on her during those first three years is something that I really wish I could go back and have a do-over. I wish I could have seen her through the eyes of a mother during that time and not a therapist. I certainly had trouble separating the two.

As her delays remained large in pre-school, I understood the reasoning and research behind the suggestion that Jaycee needed a speech generating communication device when the diagnosis of Childhood Apraxia of Speech (CAS) was given. The device didn't scare me. I had worked with them before, and I recognized how it could expand her vocabulary. I embraced her "talker" and helped program the device to say things that would help her communicate with us. There again, I was grateful for the confidence my experience gave me.

The Home Screen on Jaycee's Communication Device

When Jaycee started elementary school still barely speaking, I knew the odds of her developing clear verbal speech in full sentences was slim. It was a sad realization, but, at that point, I decided to encourage the total communication approach allowing her to use signs, words, and her device to communicate. I suppose some would say I gave up hope that she would really develop some functional speech. I had in a way, but it felt more like acceptance. It was the moment that I realized I had done all I could do, other SLPs had and were doing all they could do, but her Intellectual Disability, CAS, low muscle tone, and delays made verbal speech development difficult. I decided to embrace her abilities and be joyful for the communication she had. I completely shut off the therapy part of my brain when I looked at her. It was nice and long overdue. I never "worked" with my child again, not on speech-language goals anyway.

A few years ago, Jaycee started speaking more. It was a very exciting time to hear her say so many new words. While her speech is comprised of mostly vowel sounds, I am grateful for what she can say. She's worked so hard. She's come so far. We both have.

It's been a difficult balancing act- raising my child with a severe speech and language delay as a speech-language pathologist. It took me years to figure out how I could use my knowledge to help my daughter and support what other therapists were doing with her while not making her my own personal project. Some of the things I did in her life were beneficial and other things, I simply should have left to the SLPs treating her.

I think any mother wants what's best for their child, but it's often not clear how to make that happen. I was certainly confused at times as I navigated Jaycee's delays with my professional knowledge. Parenting requires continual learning and adjustments, and I eventually figured out how to parent my child-not do therapy with her.

Yes, I am a speech-language pathologist and the mother of a child with a severe speech and language delay. Life is full of ironies. This is one of them.

Life is also full of blessings and love. Our relationship is proof of that!

If I Could Interview My Child's New Teacher

In a few weeks, my daughter with Down syndrome and minimal verbal skills will not be walking in to her old familiar classroom full of friends. Our little world is about to change. 

From kindergarten to fifth grade, Jaycee had the same teacher at the same school. Jaycee, the teacher, and I had a rhythm and understanding. We knew what to expect from each other. We had a good parent-student-teacher relationship, which made the six years of schooling easier. If I would not have liked the teacher, that would have been a loooong six years, but it wasn't like that at all.

This year, Jaycee will start a new program at a new school with a new teacher. Any parent in this situation would feel apprehensive. I'm no different. I know everything will be just fine after school gets started, but the unknown is always scary. Change is hard, especially if you have really enjoyed where you have been, but it's time to move forward.

I think any parent wants their child to have a caring and devoted teacher, but sometimes the person who teaches our child is completely out of our control. When there's no choice, information is key. Some parents in the regular education system take quite a bit of intel on their child's new teacher by peppering seasoned parents with questions, so they can be prepared and gauge how much success or trouble their child will have.

"How much homework does she give?"

"Is her classroom pretty strict or is it laid back?"

"Do children enjoy being in her classroom?"

"Is the teacher easy or too hard?"

The new teacher is important for any parent whether your child has a disability or not. Parents in the special education system ask similar questions trying to get a sense of what their child will face.

Unfortunately, I don't know too many parents at Jaycee's new school to contact and gather my normal intel. So, I feel like I'm heading into this school year with little information to go on. 

If I had five minutes to ask my child's new teacher anything (without any fear of seeming like a weirdo to a complete stranger), these are the things I would ask her or him:

-How many children will be in this class?

-Are there any students in the class who may harm my child? If so, what's the plan to keep her and the others safe?

-My child misses many school days due to illnesses, specialty appointments, and hospital admissions. What's your policy about making up work she misses?

-How often will you communicate with me about Jaycee's school days/activities because Jaycee cannot provide any of that information to me herself?

-Sometimes my child cannot go outside and play because the air may be too warm or cold for her lungs, how will this medical need be accommodated?

-My child uses signs, gestures, a communication device, and some verbal speech. How do you feel about a total communication approach? How comfortable are you with sign language or devices?

-My child is very routine and schedule oriented. If her transition to this new school is rough, what are some ways that you will support her? 

You might be surprised by things I would not ask the teacher. I really don't care how long they've been doing their job. I've seen great new teachers and wonderful experienced ones. The opposite can be true as well!

I wouldn't ask how much experience they have Down syndrome. My child is pretty unique, so it wouldn't really matter to me if Down syndrome was a new condition for them (though I doubt it is).

I really don't care what they do in their classroom for academics. I'm just not in that place in Jaycee's life anymore. Basic math and reading skills are important, and I'm sure they'll be addressed, but most of our daily life centers around her communication and medical needs.

For the record, I've never grilled a new teacher. I've always done it in my head, of course. Still, these are the things that are important to me. I hope the staff at the new school and I can get to the same place that I've been accustomed to with Jaycee's prior school experience. We'll soon find out....