Tuesday, August 30, 2016

When My Brave Face was too Brave


I stared out the window as my husband drove. I rubbed my growing belly and nervously shook my foot in the passenger seat.

"Do you really think everything will be fine on the ultrasound?"

My husband reassured me that it would. He had been doing that for weeks. My 20 week ultrasound for pregnancy #3 was finally here. It was a day I dreaded and looked forward to all at once.

I looked back at my daughter smiling in her car seat. I reminded her we were going to get to see the baby in mommy's tummy today. She signs, "Baby."

Baby. Yes, I should be carrying a baby in my arms now and not my tummy. My second pregnancy ended abruptly at 11 weeks. I never knew that baby's gender or gave him/her a name but the loss was real and heartbreaking.

Now, I am well into this pregnancy and more nervous than ever. Is it possible for things to go right this time?

At the ultrasound of my daughter at 18 weeks, I was not worried at all. We found out our baby was going to be a healthy girl.

Imagine my surprise when at birth we found out that she had Down syndrome and a heart defect that would need open heart surgery within a couple of months. My daughter's surprise diagnoses and the miscarriage led me to being overly paranoid about this third pregnancy.

I was not necessarily worried about Down syndrome or a heart problem. I was worried about other conditions, some rare, that I had read about or had experience within my job. I was extremely paranoid. I put on a brave face for most people, including the doctors. My husband, on the other hand, knew every crazy thought I had. Poor guy.

With a million thoughts in my head, I soon found myself on that examination table in a darkened room. After a few minutes into the ultrasound, I marveled at the baby on the screen and looked at my husband and daughter watching too.

I then told the ultrasound technician, "You know you are leaving me in suspense on whether it's a boy or a girl."

The woman in a cold response and judgmental tone said, "I'm more worried about the health of the baby. I haven't even looked at the gender yet."

Uh....did she not see my daughter in the room? Did she not read in my chart that my last pregnancy didn't work out? Did she really think I wasn't worried?

After that, I kept my mouth shut. I was on the verge of a complete ugly, crying meltdown. I wish I would have had the composure to tell her what I was really thinking, but I couldn't put the words together.

I did not have the strength to ask, "Is the baby healthy?"

Of course, I was worried about the baby's health. I just couldn't ask the question. I was too afraid of the answer. If something was wrong, I knew my mental health was going to suffer. How could I go on if...?

Baby boy Elijah on the ultrasound

When she did announce that all was well with our baby boy, I let out a sigh of relief. Most of my worry subsided. The rest of it didn't go away until he was born and I could see him for myself.

All these years later, I remember that technician and her tone with me. Maybe she had seen too many parents get hung up on gender reveals. Maybe some parents were just really annoying at ultrasounds. I am not sure why she got an attitude with me, but it really wasn't necessary, especially given my history.

I am also sure there must be nervous parents who express every fear and worry to their doctor. I was not one to do that, especially with a stranger. Apparently, my brave face was too brave. Perhaps, this lady needed to see that I internally wasn't that brave.

Though that interaction with the technician wasn't the best, I did learn something from it. Medical professionals aren't in my head. They don't automatically know what I am worried about and don't understand my point of view if I don't tell them. Even though it may be difficult for me, I have learned to take off my brave face once in awhile and be the honest, possibly neurotic, parent that I truly am. 

So when I ask our family's professionals,
-If Jaycee's obstructive sleep apnea is getting worse, how great is the risk when her mask slips off at night?
-Is Jaycee going to need this medication forever?
-Is she going to recover from this illness?
-If she is 10 and can only write her name, how far do you think she will go with writing?
-Is this normal?

then you know my brave face is off exposing my fears and worries. It is then that the professionals and I learn from each other and have a better understanding of where we both stand.

To all you other moms out there wearing that brave face constantly, do not be afraid to take it off and reveal what's underneath once in awhile.

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Thursday, August 25, 2016

Guest Post- 5 Ways to Get Free or Affordable Speech Therapy

It's Therapy Thursday! This is the day I share something based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs. Today, I am bringing you a guest writer who will share something new.

Lisa Geng, who writes over at http://pursuitofresearch.org/ has a great tip for you today:

5 Ways to Get Free or Affordable Speech Therapy

By: Lisa Geng
Perhaps your child is a late talker without a diagnosis and you are looking for a bit of help.  Or perhaps your child was just diagnosed with apraxia and you are searching for a lot of help.  Either way navigating how to secure appropriate therapies can be a daunting task.  Below are 5 ways to secure free or affordable speech therapy.

1. Early Intervention

In the US you don’t have to wait for your pediatrician to refer you for an evaluation for services through Early Intervention  if you have a concern about your child’s development in the following areas -call.

  • Hearing
  • Cognitive development
  • Speech
  • Social-Emotional development
  • Language
  • Self-help skills

If your child is 3 years old and qualified they’ll get something called an IEP to attend your town school’s special needs preschool program.  For speech therapy and related services check this speech therapy matrix which goes by severity to see approximately how much therapy your child should be entitled to.  Even though securing appropriate therapy through the school is your child’s federal right, it may not be easy and you may want to use outside the school professional evaluations to help you advocate.  Which brings us to:

2. Insurance

While your child is legally only entitled to appropriate therapy through the school IEP, privately you can seek the best.  And why not seek the best?  Don’t choose your child’s professionals as you do your sports teams and only go to those within a certain radius of your home.  If you have to drive a bit further to find someone amazing for at least a definitive diagnosis, and to help oversee therapy, help in setting short as well as long term goals for the IEP, and help monitor progress, it’s highly recommended.

Main thing to remember is don’t just take “no” for an answer when looking to secure insurance for speech and occupational therapy, as well and other related services for your child.   For insurance it’s all about the coding used.  Make sure you don’t have a diagnosis with the word “developmental” or “childhood” in it as that implies the condition is one that the child will outgrow on their own without therapy and will be denied.  For example apraxia is a motor planning disorder, and there are various neurological codes to help secure coverage for that.

If autism or apraxia is suspected or diagnosed by an SLP you’ll want to confirm or rule out global soft signs of hypotonia, motor deficits, and/or sensory processing disorder with either a pediatric neurologist or developmental pediatrician.

Some codes are red flags for denials. A great code to use if you have a child with apraxia is 781.3 which is “lack of muscle coordination /coordination disorder.” This shows a physical diagnosis, which is typically covered, versus a developmental diagnosis, which is typically not covered.

-If there is an associated expressive language disorder with the apraxia, which is commonly the case, use #784.6 which is “other symbolic dysfunction.”

If #315.3, 315.31, 315.39, or 315.9 are used, these are developmental codes and may not be reimbursed.

Note: In the ICD 9 medical code book, #315.4 is Dyspraxia Syndrome. The confusion is that is that many of the #315 codes are developmental, but not this one.

The code for apraxia is under ICD-9 Codes. Insurance Code Website

-Oral/verbal apraxia is a neurologic disorder so never use the word developmental (admin note: or childhood/CAS) or a code that is “developmental” in the report or on the bill.
-Useful ICD codes for Apraxia of Speech are #315.40, #784.69, #781.3. The latter code is also one used for Hypotonia, Sensorimotor Integraton Disorder, and Coordinaton disorder, which may be associated with apraxia of speech.

“apraxia, acalculia, agnosia, agraphia” is 784.69. Generally, codes in the 700 series are used for organic disorders. You should have neurological information supporting use of this code/diagnosis and should be able to answer the following questions:

  • Is there a statement from a neurologist or pediatrician supporting a neurological component?
  • How is this child’s verbal apraxia different from an articulation disorder?

For more insurance tips and sample letters for your child’s professionals as well as for the insurance company visit this page.

3. University Speech and Hearing Clinics

Check Google to see if there are any universities near you that have a speech and hearing department.  Through them you can typically get free or very low cost therapy provided by a graduate student overseen by the PhD that runs the department.  

4. Sponsorship

There may be an ELKs or similar organization near you that sponsors special needs children.  My son for example was sponsored by the ELKs in NJ for both speech and occupational therapy.  According to the Elks “Nationally and locally, the Elks have worked diligently to better the lives of handicapped youngsters. The Order has a long history of supporting Special Olympics events, donating special equipment and supplies to the families of disabled children, sponsoring the treatment and research of many illnesses that affect children, and arranging for medical personnel to provide free in-home therapy services.”  Check to see if there are any sponsorship opportunities for your child.

5. Placing An Ad

This one may seem risky, however it was shared at one of the Cherab support groups as a highly successful way of securing inexpensive appropriate therapy.  The mom placed an ad looking for an SLP for her child and asked for references and resumes and was shocked at both the amount and the quality of the SLPs that responded to her local ad.  Of course not all areas of the country or world may have the same response level, but may be worth a shot.

The mom wrote

“THERAPY idea for all of you parents!!!
I know a lot of you are stuck without ANY help from social security, Medicaid, etc and are paying out of pocket, or HUGE copays for therapy … WELL…
I posted a job offer on indeed.com asking for a private therapist, and I offered 30$ for 30 mins or 60$ an hour for therapy sessions a few days a week (right now, I am paying 100$ a week for TWO sessions that are 30 mins long… ugh)
Anyway, within a week, 2 people responded. I have hired one of them. She is AWESOME and the GREAT thing is, she is going to come TO my home…
So feeding therapy with vomiting doesn’t have to happen at an office! WOOOOOOT!
A lot of these therapists are really wanting to be private contractors… they just don’t have enough people to start. Just wanted to share this info.
(By the way, my daughter is too old for Early Intervention and she is already in a pre-k class, special education at school. just FYI)“


Lisa Geng

Author and Executive Director at The Cherab Foundation

Lisa Geng got her start as a designer, patented inventor,and creator in the fashion, toy, and film industries, but after the early diagnosis of her young children she entered the world of nonprofit, pilot studies, and advocacy. As the mother of two “late talkers,” she is the founder and president of the nonprofit CHERAB Foundation,co-author of the acclaimed book, The Late Talker, (St Martin’s Press 2003), and is instrumental in the development of IQed, a whole food nutrition meal replacement. Lisacurrently serves as a parent advocate on an AAN board for vaccines, and is a member of CUE through Cochrane US. Lisa is currently working on a second book, The Late Talker Grows Up and serves as a Late Talkers, Silent Voices executive producer. She lives on the Treasure Coast of Florida.

***This post originally appeared here.  Reposted with the author's permission.***

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Tuesday, August 23, 2016

Why I Love Ronald McDonald House Charities

Have you ever passed one of those change boxes at a local McDonald's collecting money for the Ronald McDonald House Charities? Maybe you threw in a quarter or two and wondered who this was going to help.

Well, let me introduce you to my family, people who have benefit from this charity.

In 2006, I became acquainted with the Ronald McDonald House charities in the St. Louis area. When my daughter was born, she needed to stay in the NICU. We had no idea when Jaycee was born that she had Down syndrome and a congenital heart defect. We were planning on the standard 1 or 2 day admission in the hospital. We had not planned on things going awry and spending 10 days in the NICU with Jaycee.

The first night Jaycee was in the hospital we stayed in a room the hospital provided. It had bunk beds and no private bathroom, neither of which are ideal for someone recovering from delivering a baby.

Jaycee and I in the NICU

Next, we moved into a nearby hotel that offered a discount. You might assume that the hotel discounts are deep ones and possibly providing the family with extra perks. No-not at all. A discount helps, but there is still quite an expense involved. After a few nights, we were stressed with the mounting costs we saw with this hotel bill on top of all the other stressors.

Then, the social worker offered us a spot at the Ronald McDonald House. We jumped on the opportunity. We checked out of the hotel and checked into the nearly free Ronald McDonald House. There was a small fee (and I mean small) for staying there, but meals and drinks there were all free. We did not take advantage of everything the house offered. We spent almost our entire day at the hospital. But, it was nice to have a hot shower, free food, and a private sleeping area. We were happy that the expenses of our lodging were eliminated while we were already dealing with so much as new parents. As part of our "payment" for staying there, we were asked to complete a few chores like taking out the garbage or emptying out the dishwasher. Things may be different now since our stay there was 10 years ago.

Jaycee in the hospital
Since Jaycee's birth, she has been in the hospital for surgeries and sicknesses several times. We have been offered to go back to the Ronald McDonald House a few of those times. We try to only use this option if we anticipate Jaycee's stay in the hospital being over a week. When we have been interested in a room, they are always full. Generally we add our names to list but never get the call in time. I am glad that the other families are benefiting from this charity even when we are not. I think the waiting list shows just how popular and needed this option is for families.

A few years ago, the hospital that Jaycee uses added a Ronald McDonald Family Room right inside the hospital. We have used this room multiple times since it opened. This room is staffed by volunteers who assist families. What I love most about this family room (which is actually several rooms) is the hot and clean showers. These showers are much cleaner than the other ones available to parents, so my neat freak personality loves this. If I have forgotten something in the rush to the hospital, they have soap, shampoo, lotion, toothbrushes, etc, free of charge. Free snacks and drinks are available (sometimes fresh baked cookies). Did I tell you how much these cost in the cafeteria? There's also a laundry area. Pack for 2 days but staying for 5? This laundry room is your happy place. The soap and everything for laundry is all free. If your child is having a rough day, the volunteers will even finish up your wash for you and make sure it's dry. There's also a quiet room if you need to sleep or make a private phone call, a desk with a computer to update family members, and a spacious area to spend time with your other children who may be visiting. I love the Family Room! In just a short elevator ride, I can be in a place that is there to support me while I support my daughter.

The next time you see the change box at your local McDonald's consider dropping your leftover change in it. Think of me and many other families who have been blessed by this charity.

To learn more about the Ronald McDonald House Charities or to donate to this worthy organization check them out online.
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Thursday, August 18, 2016

Therapy Tip-Balancing Therapy at Home

Here it is...Therapy Thursday! This is the day that you have been waiting for all week.

Thursday is the day I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's tip is:

Help for Balancing Therapy at Home

Being a parent makes life busy. If you are a parent of a child with developmental delays and/or a disability, life gets even busier.

When Jaycee was 2 months old, I started her in home early intervention therapies such as physical therapy or occupational therapy. Before she turned 3 years old, she had 4 different therapists addressing different areas of delay. These people were extremely helpful. Part of their job was to give me ideas to help Jaycee at home. If you have 4 people giving you ideas every week, then you might understand why I felt overwhelmed at times during those toddler years. While they did their job well, I felt I HAD to do home practice with Jaycee or else I was a bad mother. I also felt her progress or lack thereof was a direct result of what I was doing with her at home. It was extremely hard finding a balance between helping Jaycee with her developmental needs and not feeling crazed by the home activities that needed to be done.

Now that Jaycee is 10, I have a better perspective. Our life does not center around therapy appointments and home intervention practices. However, my job as a pediatric speech-language pathologist means that I am still in a position of offering families ideas to build skills with their toddler at home.

Here are some things I tell these parents in our on-going discussions on how to help at home:

-How much home intervention by parents is enough?
Every parent and family is different. Some parents like to focus on specific tasks throughout the day. For instance, they may focus on getting their child to say "drink" whenever the child is thirsty. Another example would be going over a few body parts at bath time during the week. Some parents like spreading out the home interventions throughout the day in natural routines. That is how the birth-three program is designed to help parents.

Still, other parents like to block off times to work with their child. This is what I always preferred with Jaycee. I set aside 20-30 minutes a day working on various tasks. I made a chart (I know I'm strange) marking what I would do for the 5 blocks of time a week. One day would be a sensory activity, another would be gross motor, another would be a signing/language activity, etc. It is not to say that I ignored Jaycee the rest of the day. I merely liked having our home therapy time together and then scratching it off our list of things to do. I did not like spreading things out all day. It didn't work for my brain.

Deciding what is enough is difficult. It really depends on your child. Speaking as a parent, if home intervention is causing lots of stress, then it's time to reconsider what you are doing.

-Can we have days off?
Yes!! Everyone needs a day off! Please take a day off from therapy and just enjoy your child. You are probably doing things to help them throughout the day that you aren't aware of. So, even on your days off I am sure there is something you are doing to help your child in a natural way.

Near the end of my daughter's birth-three program experience, she sometimes had two, 1 hour therapy sessions in a day. On these days, I did nothing specific to "work" with her. I imagined she had enough therapy already and didn't need me to do even more.

-You mentioned that I am helping my child naturally. What do you mean by this?
There are many ways parents build language naturally with a toddler. Many parents just instinctively do these things. Here are just a few examples:
-Peek-a-boo and patty cake are social games that we often play with toddlers. This encourages social interaction, which is an important component of language development.
-Nursery songs are also commonly sang to babies and toddlers. Songs like "Wheels on the Bus" or "Itsy Bitsy Spider" are great for language because they are repetitive, encourage vocalization, and also encourage imitation as we look for the toddler to mimic the motions as we do them.
-Simply playing with your child is another good way to help them. When you play with them, you are modeling words and showing them how to play with toys. This encourages them to imitate what you are doing and saying.
-If you are talking to your child, you are modeling language. The main way a young toddler learns language is by hearing it from another person. If you are speaking to your child, then you are helping them understand new words and hopefully (and eventually) say those words.
-Giving your child directions is a way to target receptive language (the understanding of language). By telling your child to 'come here,' 'give it to me,' 'get your cup,' 'give me five,' 'give me a kiss,' you are checking your child's understanding of language via simple directions.
-Books are also things that parents often naturally do. Reading books encourages the child to look at pictures, build vocabulary, and attend to an activity that requires listening.

Finding a balance between therapy needs and home life can be difficult, especially if your child has more than 1 area of delay. It is important to find that balance to maintain healthy relationships among family members and to decrease stress that may arise. I hope that I have showed you that approaching therapy can look differently from one home to the next. If you are needing help finding this balance or for some better strategies to integrate activities into your daily routine, please ask your child's therapist.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

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Tuesday, August 16, 2016

How Slow Can Jaycee Go?

"Can we go any slower?"

I ignored the comment directed at me. As I meandered my way through a roped maze that led up a flight of stairs and to the top of a water slide, I knew the teenagers behind me would like to move faster. I am sure they saw was a thirty-something year old woman carrying a two man raft on her head wondering why she was walking at a snail's pace. Directly in front of me, they probably couldn't see Jaycee. If they did, they couldn't see that she had Down syndrome. They definitely didn't know she normally walks with AFOs on her feet and has low muscle tone and health issues, all of which makes her move slower and tire easily.

The question lingered in my head. "Can we go any slower?"

Yes, actually!

This was our second trip up the water slide which I chose because it had the least amount of stairs and walking. Even though I put on a brave face, I worried how Jaycee would react. She enjoys these types of rides, but the heat in combination with the stairs and walking has taken its toll on her. I knew at any moment Jaycee could sit down and refuse to move. I knew this because it happened the day before.

Just before we decided to leave the water park on that fateful day, my husband suggested we do a bigger water slide that had several flights of stairs to climb. There was also a long line of people on those stairs. I saw disaster written all over this plan. It was the end of the day, so she was tired. Hey-even I was tired. The long line meant we would probably be waiting a good 45 minutes, which was a very long time for Jaycee. I am not going to lie, we had a blow up over the decision to do this water slide. I didn't want to do it because I knew Jaycee couldn't handle it. My husband thought it would be fun and told me not to let fear prevent us from trying. I may have yelled at him, and he may have yelled back. But, I finally (and angrily) decided to give into his demand after he agreed to deal with her behaviors.

Within minutes in the line, Jaycee was aggravated and confused. She sat down and refused to move momentarily over and over again. I could feel my anxiety rise up as we were now boxed into this line with no easy way out. That's what I wanted to do at that point, exit the line. I watched as my husband lifted and talked Jaycee through each start and stop the line made. I wished he would have said this was a bad idea so we could all leave the line, but he never did. I tried not to look around at people behind us watching my husband and Jaycee fight for every step to the top of a long water slide. I wondered what the spectators to this bizarre line wrestling match thought as they witnessed Jaycee drop to the ground again and again. I wanted to shout to the heavens when we reached the top. Because, we did reach the top. It wasn't a mountain, but it felt like it to us.

The three day vacation at a theme park was full of decisions like this. Can Jaycee handle this? Will this cause a meltdown? How will she react if we do this? Having been to this place before, we knew some things were no problem. But, we got brave and tried different rides and water slides. Each time, my husband and I watched Jaycee looking for clues as to how she felt. We took turns offering her explanations of how lines work and why we just can't run ahead. We encouraged her to keep going even if she felt a little tired.

So there I was bravely taking Jaycee by myself through that maze of a short set of stairs to the top. I ignored the girl who wondered if Jaycee could go slower. If she only knew, this slow pace was actually a big achievement for her. I was proud that I had did this by myself not once but twice. I decided to let the comment go and focus on my daughter. Three months ago, Jaycee was sick in the Intensive Care Unit and today she is very slowly walking up stairs for a water slide. I know what's important, and that girl's comment was not.
Jaycee and I on a ride that required no stairs to get on it.

If you are wondering, my husband and I made up once we reached the bottom of the water slide.

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Thursday, August 11, 2016

Therapy Tip-Preparing Your Child for a New Experience

Today is Therapy Thursday-the day I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's tip is:

Preparing Your Child for a New Experience

Going new places and having new experiences always creates a little worry for me. My daughter has Down syndrome, an Intellectual Disability, and is minimally verbal, so sometimes new experiences are difficult for her to understand. I have learned that her behavior is better and her anxiety is less when she is well prepared for these new things.

The problem has been trying to explain new things to a child who is minimally verbal. Sure, I can talk all about the experience using words that I know Jaycee can understand. But, how do I really know she understands? Since she is minimally verbal, she is unable to ask questions to clarify things she does not understand. The conversation often seems one sided. I discover how well I have prepared her when we arrive at the new place and I can see how she reacts. At that point, it's often too late to do anything to help the situation.

Like many other children with Down syndrome, Jaycee is a visual learner. She responds well to videos and pictures to help her understand. This has become the most valuable way to help Jaycee understand new experiences and places. The internet and YouTube are extremely valuable tools.

Let me give you some examples of what I have done in the past to help Jaycee.

-When we made our first trip to Six Flags, I showed Jaycee many YouTube videos of the park and rides. As she watched the videos, I narrated what was happening and what she may see or do.

-In order to prepare Jaycee for a pageant for people with Intellectual Disabilities, I showed her all the pictures available online as I explained the idea of a pageant to her.

-When we go to our yearly Down syndrome events, I show her pictures from the previous year while I remind her of what happened before and may happen again.

I do search for the right videos for Jaycee to watch prior to showing them to Jaycee. I don't want to waste time starting and stopping videos with her that aren't what I am looking for, so I do try to do some prep work on YouTube to find the ones that will help Jaycee best.

For Jaycee, I tend to prepare her a day or two before the new experience. The videos are good enough to teach her quickly. She usually does not need to watch a video over and over again to understand. If you feel like your child needs more time, you may need to start using these visuals well before your new experience.

If you are having trouble with your child in new experiences, then I suggest you give some of these visuals using the internet a try. There are many useful videos on YouTube that can help our children understand.
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Tuesday, August 9, 2016

"Will sissy ever drive a car?"

How should I answer this?

Taking a second to think, I chose to be open and real with my son.

"I don't know if sissy will ever drive a car. Taking a written driver's test would be hard for your sister since reading is hard for her and writing is almost impossible. So, I am not sure if Jaycee will ever drive. But, she's only 10, so that's a few years away."

"That's what I thought," my son replied.

My 7 year old son is a thinker and a planner. He is more of a planner than I ever was as a child. He talks about getting his driver's license when he's 16 and buying a truck. He talks about going to college and having his own house one day. He talks about fixing motorcycles and riding dirt bikes as possible professional options.

Sometimes, these talks lead him to reflect about his sister. "I wonder if Jaycee will go to college," he mentioned one day.

"I am not sure. Some people with Down syndrome do, but Jaycee has some pretty big problems learning and speaking. So, I am really not sure. It's okay if she goes to college, and it's fine if she doesn't," I replied.

"Going to college is a choice," he replied in agreement.

Another day when we were talking about his future in building motorcycles, I asked Elijah what job he thought his sister may have one day. He couldn't think of anything.

I told him I thought she might make a good pizza maker at a restaurant because she loves pizza and helps us make it at home. He wasn't sure if she could follow the directions or if she could resist eating the pizza. He has a point there.

Later that day, he came to me and said, "Mom, I have been thinking. I know one job Jaycee could never do."

I wasn't sure what he was about to say next.

"She can't be like you mom. She can't teach people to talk."

True. Being minimally verbal, I doubt Jaycee could ever be a pediatric speech-language pathologist. But, I was happy that my son continued to think about possible jobs for his sister long after our conversation ended.

These conversations happen ever so often. I encourage them. We have always been open about Jaycee's Down syndrome within our family. It is not looked at as something that is "bad." We don't shy around the subject. We encourage questions, and we talk about Jaycee's difficulties as he sees them.

I am grateful that my son thinks of his sister. It has always been my hope that they would have a strong relationship where they consider each other's needs. My son is on that track. He wonders what her life will be like years from now, as I do too. Jaycee may not be able to verbalize these questions about her brother's future, but I do know she cares deeply about him. Whenever we go to the doctor without my son, Jaycee will ask throughout the day, "Bubba?" She wants to know why her brother isn't there with her.

I don't know what the future holds for Jaycee. I don't exactly know what her life will look like in 10 years. But, my hope is that Jaycee and her brother will have that connection and concern for each other that lasts a lifetime.

Related Post:  My Son Explains Down syndrome

Related Post: Siblings: Helping Them Understand
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Thursday, August 4, 2016

Therapy Tip-3 Ways to Help Toddlers Use Utensils

Welcome to therapy Thursday!
This is the day that I give a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's tip is for:

Helping Toddlers Use Utensils

As a speech-language pathologist working with the birth-three population, I sometimes come across toddlers who are really struggling to use utensils. These toddlers often have low muscle tone and/or fine motor issues that make holding and using utensils difficult. When Jaycee was a toddler, she struggled greatly with this. It wasn't until she was 3.5 years old when she was able to successfully and independently use a fork and a spoon.

Here are my 3 basic tips and things to consider when helping toddlers who are struggling to use spoons and forks.

1. Get the right plate!
You might think any toddler plate will work when teaching utensils. For those toddlers that are having issues, they may benefit from using a deep toddler plate. Here is the deepest toddler plate I have at home.

It may look similar to the ones you have in your cabinet but this one is at least an inch deep. This depth is important when a child uses the sides of the plate to help food get onto the spoon. A plate with short sides or sides that curve out will make it more challenging for the child who is working on using utensils independently.

2. Make sure the plate is secure.
Another thing that needs to be looked at for some toddlers is the movement of the plate. If the toddler is really working to get the food on the utensil, the plate may slide or shift around which only causes more problems for the toddler. There are many plates sold with suction cups on the bottle to combat this problem. These are great for high chair trays. Back when my kids were small, I didn't have any luck with these suctioning enough to stay put. If this is happening for your child too, then a great alternative is to purchase some cabinet shelf liner. You can cut a piece of liner out for your child's plate to sit on. This should help minimize the movement of the plate while allowing the toddler to be more independent.

3. Get the right fork and spoon.
There are many different spoons and forks available in chain stores and online. I have a large collection of spoons but here are a few:
Depending on your child's issue, they may have more success with a specific type of spoon. There are spoons with thicker handles while some have thin handles. There are spoons made with flatter bowls (open part) while others are typical toddler sized bowls. There are spoons with angled handles to help the toddler with limited hand and wrist movements. These differences in utensils are important for some feeding issues. For example, toddlers with Down syndrome who have smaller oral cavities in general, may benefit from spoons that have bowl sizes that are smaller. If your child receives occupational therapy or speech-language pathology, they should be able to observe your child eat and make a recommendation for you on which utensil might be most successful.

If your toddler is struggling, try some of these tips, consult your child's therapist, and keep working!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

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Tuesday, August 2, 2016

5 Ways I am Messing Up as a Parent

Parenting advice is easy to find. You don't even have to look for it sometimes; it finds you.

With my daughter, I have always felt the amount of advice we have gotten was quadruple the norm. Part of that is because there are simply more professionals involved in her care. She sees a genetics team, GI doctor, Pulmonologist, Cardiologist, ENT, ophthalmologist, and audiologist. She has also a team of therapists and teachers at her school.

Many appointments with professionals over the years have resulted in some advice and recommendations. Of course, part of their job is to provide guidance and educate me in how to best help Jaycee, but sometimes I just can't do everything they ask. When you have a child who has many developmental and medical needs, life becomes a balancing act. For this reason, I can't follow every rule and piece of advice I am given.

These are just 5 areas I mess up as a parent.

1. I give my child juice.  Insert screams from the medical community... Doctor after doctor and the dentist have all lectured me on the incredible dangers of juice. I have been told to dilute juice if I do give it to Jaycee. Yes, I do dilute it sometimes but who dilutes juice for their 10 year old? She rarely has soda after all. But, I do have a feeling of guilt every time I pour her a glass now. The guilt is helpful.

2. My child watches way too much television. Jaycee lacks independent play skills. Occasionally, she will briefly play with her brother. But she rarely plays on her own. We have surrounded her with books, dolls, puzzles, play-doh, and everything in between. Still, if we shut off her devices, she generally just stares into space or follows me around the house. Her interest in movies has been a blessing when she's doing her twice daily nebulizer and vest therapy treatments. It also comes in handy when she's sick and confined to a bed for days. But, I do let her watch way too much tv. Go ahead and shake your head at me- I deserve it.

3. My child sleeps with stuffed animals. (Gasp!) Some of you may wonder why that is a problem. Well, let me tell you. Jaycee has asthma. It is advised that you not allow stuffed animals in the bed when sleeping because of dust mites. I follow many asthma protocols. Our house windows are shut 363 out of the 365 days a year because fresh air is filled with scary pollen, dust, and other allergens that could infiltrate our home. We rarely if ever have fresh flowers in our house for the same reason. We are neurotic about keeping Jaycee away from smoke. No one in our family smokes cigarettes but the dangers of smoke can come from bonfires, charcoal grills, or a neighbor burning leaves/shrub. These are just of a few of the things we do to help prevent her asthma from flaring up. With all of her diagnoses, we have dozens and dozens of guidelines to follow. Some things have to give. Stuffed animals and dolls in the bed are one of them. She wants these friends in her bed, and I am not going to deprive her of that too.

4. My child is overweight. Prepare your lecture; I have heard it before. I don't like my child being overweight; I don't like that I am overweight. I hate it actually. A few of Jaycee's doctors scrutinize how much weight Jaycee has gained between each visit. I understand their concern, and I realize this is an issue. I feel like an awful parent every time. But, I think I am in a more complex situation than they realize. Let's go back a few years. Jaycee was a healthy weight when she entered preschool at age 3. During the preschool years, her weight started to stack on. She was hospitalized 7 times during her three years of preschool and was sick a few more times but treated at home. Oral steroids became a common medication during those years. She ate and ate while on them. I would tell her no at some point and she would cry while signing "eat." I didn't know what to do; no one prepared me for her appetite and how to respond to it. During those years, her lung issues really became a problem and her asthma symptoms weren't controlled well by medication. She wheezed in cool weather. She wheezed in hot weather. I was afraid to take her outside most of the time because I was afraid of triggering an asthma event. Hence, exercise was limited to what we could do in the house. I purchased an indoor trampoline, a large therapy ball, and other games to play indoors. Getting her to comply with them was another story. Getting her to comply with outdoor activities is hard too. What does she like to do at a playground? Swing and not run and climb to get real activity. I know, I know, I am making excuses. I realize that. But, with Jaycee it is simply not an issue of I am feeding her too much. Her medications affect her weight. Her hospital admissions and illnesses affect it. Her almost 2 hours of sitting doing nebulizer and vest therapy treatments impact it. Her Down syndrome, which generally means a slower metabolism, is part of the problem. The fact that she eats extremely fast and doesn't seem to feel full is a problem. I still feed my 10 year old on a toddler plate so her portions will be smaller. Almost every meal, she wants more than what I give her. I restrict her diet for acid reflux precautions already (no eating 2 hours before bed, limited tomato based foods, little/no chocolate, etc.). What can I say? I am a terrible parent. Don't worry though, because I will be reminded of that at her next specialty appointment.

5. I do not care if my child does her homework. Sorry Mrs. Tolley! After your child has a couple of scary illnesses that almost take their life, your priorities change. That happened for me in 2013 when we weren't sure if Jaycee was going to survive after being intubated and in respiratory failure. Then a similar event happened again in 2015. It became clear that life is just not guaranteed for sweet Jaycee. After experiencing some things like that, it is difficult to fight your way through doing homework with your child. When Jaycee throws a fit and refuses to do her homework, I give up. I have learned to pick my battles and completing homework is not a battle I am willing to pick after a long day. Jaycee is not given a free pass; she will be put in time out or have movie time taken away, but I will not stress myself out to get her homework done. In all honesty, Jaycee's teacher has been good about understanding my point of view on this subject.

It is clear that I can do better in some areas. When these areas are brought up by professionals, I do confess my faults. They try to convince me to change my ways probably seeing me as a rebellious mother.

But, I will say that sometimes I am not given enough credit by these same people. Where are the doctors when I am setting alarms to wake up in the middle of the night to give her a breathing treatment? Where are they when I do her 50 minute medicine regime twice a day no matter where we are or what we have on the schedule? Where are they when I have a taught my child a skill to be more independent? Where are they when we are sitting on the couch simply loving each other? No, I don't get high fives and "Good job!" for those things.

For all the way I mess up as a parent, I can assure you there are plenty of things I am doing well. Now, who wants to celebrate the things I am doing well with a tall glass of 100% undiluted apple juice?
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