My Special Chores

My Special Chores.......A peek into the life of a mom caring for a child with special needs:

• Once a week, clean Jaycee's bi-pap parts. This involves taking the hose off, disconnecting the mask, taking off the air filter, taking out the water chamber and submerging all in soapy water.
• Clean the AFO braces once a week with soapy water.
• Clean the inhaler aerochamber once a week. This involves soaking the chamber in soapy water for 15 minutes and air drying overnight.
• Once a week, I clean the nebulizer mask. Periodically, I change the tubing on the nebulizer.
• Once a month, check Jaycee's night diaper supply & reorder if necessary.
• Once a week, check the medications to see if any need reordered. Go to the pharmacy if needed.
• Schedule doctor's appointments and move things around at work to adjust for them.
• Dust the house regularly to prevent allergens from building up.
• Monthly, check the stock pile of various medical supplies like oxygen tubing and saturation monitor probes.
• Regularly change messages or add pictures to Jaycee's communication device A.K.A the talker.
• Every couple of months, change the filter on Jaycee's airway clearance machine.
• At the end of the week, I plan my meals for the next week. Ever since we learned Jaycee has severe acid reflux, I do my best to only have 1 or 2 meals a week that could possibly be triggers for her reflux. I make sure I have the foods available that are good for Jaycee to eat that won't cause her reflux. This does take some planning and thinking!

Awkward Moments

When you have a child with special needs, there are some unsuspecting, awkward moments that happen.  I hate when these awkward situations arise that I'm totally unprepared for. I never know how to react and are usually so stunned that I don't end up reacting at all at the time.

Imagine being me, the mom of a sweet child with Down syndrome who attends a special education program, when people make these statements:


"I heard some terrible news. The doctor thinks that Mrs. Jones is going to have a baby with Down syndrome."  

"I just found out that I'm having a baby with Down syndrome, and I'm not sure I want to keep it."

"We need to have special prayer with our church because we think we are having a baby with Down syndrome." Followed by several minutes of prayer for the unborn baby not to have Down syndrome.

"I wish my child didn't have to have an IEP. It's so sad."

"I don't want MY child is the special education room. That's for kids who are really bad off, not MY child." (I have heard this one several times!!!)

"I don't want MY child in the special education room with all those special ed kids who are mean and don't talk!"

"Can you believe she did that? She's so retarded?"

"I told him that he's doing it wrong. I told him that's the way the special kids do it."

*****

Ok, I know people make mistakes and sometimes you say some things without thinking. But, really sometimes I can't believe what people say to me. 

Please friends, family, and professionals, think before you speak and apologize if you said something offensive.

And to my fellow moms who find themselves in these awkward situations, practice forgiveness, love, and patience. Respond in love because most people really don't know they are being offensive.

Someone Loves Me

If you come here often, you know that my daughter has limited verbal speech due to childhood apraxia of speech. Like any parent, I longed to hear her say the words "I love you." Sure, she could sign it in sign language and she could push the buttons on her talker to say it too. But I wanted to hear it from her own mouth and voice.

This summer I decided I would start to work on it causally during the day whenever it seemed like an appropriate time. I understood it would take repetition and practice in order for her brain and mouth to build a pathway to remember how to say it. So I took my time breaking it into chunks for her to repeat. I also know that Jaycee shuts down if she feels pressured to speak, so I didn't sit down and "work" with her. I just practiced it in natural situations.

I always started with, "I love you, Jaycee." This was a cue to her that I was expecting a response back.

Next, I said, "Jaycee, say love (pause) you (pause) mama."

Jaycee could already say "mama," so at first all she said was mama back. That was what I expected. If she would have said love or you the first few times I would have been completely shocked. But, we kept working.

I always said my phrase cue first of "I love you, Jaycee" then led her through the other words. I praised any attempt even if all she said was mama.

Eventually, Jaycee started to make vowel noises for love. It sounded like "uh" (nothing for you) "mama." It was exciting to see progress. I never expected her to say love correctly because I have never heard her make and L or a V sound. With apraxia, it is very important to take any approximations of words and work towards improving those attempts later.

Finally, after a few months. I said, "I love you, Jaycee." To which she replied, "uh oo mama." She did it! It was amazing! It was the best she could do, and it was great! The day she said it, we practiced it naturally after a hug or a kiss to build repetition to help her remember how to say it.

After a few successful times, I showed my husband, Jason. He was impressed. He said, "Jaycee, I love you." She didn't say anything back to him as I expected. He changed the phrase cue and he was changing mama to dada. That's too many changes for someone with severe apraxia.

I taught him to say the phrase cue first. Then, he broke up "love you dada" just like I did. Because she already had a motor plan set for love you, it didn't take her long to learn this new phrase.

Now, if we say "I love you, Jaycee" she can say "uh oo mama" or "uh oo dada" back to us. She has yet to say it first as she still depends on our phrase cue but I'm sure in time she will say it to us spontaneously.

It's been a big accomplishment for her, and we are proud of what she has learned to do. If there was ever any doubt, now I know that she loves me!

Private Therapy: To Do or Not To Do

One question that many parents of children with special needs often ask themselves is: Should I get extra therapy for my child outside of the school therapy program? I have asked myself this question several times over the past several years.

There are many factors to consider when thinking about obtaining therapy from a speech-language pathologist, occupational therapist, or physical therapy in private practice, at a clinic, or in a hospital setting. (Keep in mind, I'm writing this as a mom and a speech-language pathologist.)

Why are you wanting private therapy??
First, as a parent, you have to understand why you want private therapy for your child. Is it because your child has a diagnosis that warrants extra time in therapy? Do you want your child to learn something specific? Is there a problem with therapy from the school?

I have put Jaycee in private therapy at different times in the past few years for a few reasons. The first time Jaycee had private therapy was at 3 years old because she was not feeding herself. I sought out an occupational therapist with experience with Down syndrome with hope to attain the specific skill of self-feeding. I really wanted her to become independent at meals. There have been other times I've gotten Jaycee private therapy because she was recovering from an illness and not attending school. Private therapy replaced school therapy until she started school again. I have also sought out private therapy for issues that the school therapist didn't seem to understand how to address. After the evaluations, I shared the reports with the school, so they could address the problems. In other words, I used private therapy to get someone's expertise in a particular area.

It is really important to understand why you want private therapy and what you hope the outcome will be. When you answer this question, that will help you determine if private therapy will be done short term or a long term undefined amount of time. Three of my private therapy experiences have been short term (around 3 months). But, once I had Jaycee in a long term, undefined therapy situation that lasted over a year. For me, I will never do the long term thing again!

Here's some things to consider:

Pros of private therapy
-Private therapy is almost always a one-on-one session.
-Typically, sessions are 45 minutes to an hour, so private therapy may mean more time in session compared to sessions at the school.
-In private therapy, you will most likely have more of a say on what is being addressed. If there is a particular skill that is important to you, you can ask that therapy address it.
-Because you are taking your child to and from private therapy, you often have more opportunities to speak directly to the therapist, ask questions, and get feedback on how your child is doing.
-If your child has had the same therapist at the school for a number of years, private therapy allows you to get another person's professional opinion. Sometimes, change is good and finding a person with a fresh perspective may make a difference.
-You might find someone with a speciality that isn't available at the school. Sometimes, you don't always have a choice of therapist when it comes to who works with your child at the school. But that isn't the case with private therapy. You can research therapists, find out if anyone has experience with your child's condition, and possibly find someone who has been trained in approaches that interest you.


Cons of private therapy
-Private therapist does NOT always equal better. Sometimes parents think a school therapist isn't as "good" as a private therapist. The truth is that every therapist is unique with their own treatment approaches and experiences guiding them. One is not better than the other. So, don't automatically assume the private therapist is going to be a magic worker. Do your research on the therapist's experience before starting therapy! There are good and bad therapist everywhere!
-Private therapy will most likely bill your insurance or medical card, which can evoke major headaches! So, you will need to do your homework to find out what your insurance covers and if there is a cap on the number of visits a year your child can receive. For instance, some plans will allow 25 visits per year. You will need to know this information and keep track of the number of sessions so you don't go over. Don't assume the private therapist will keep accurate records of this. If your insurance has a cap on the number of visits per year, I recommend you use those visits over the summer when the school may not be providing therapy.
-Private therapy can be very expensive. If you have insurance co-pays or if your insurance doesn't cover the therapy, you may be stuck with an expensive bill. I have personally seen charges for $100-250 per session, so that can add up very quickly if you are paying for it!
-Burnout happens! You do not want to burn your child out of therapy especially if you are paying for it! If your child is going to school, receiving therapy at school, or involved in other activities, private therapy could be too much. I found that private therapy after school was totally pointless for Jaycee because she was so tired. Sometimes, the private therapy in addition to my job and home responsibilities was just too much for me, so I got burned out first.

In the end.....
there are reasons why private therapy may be a good idea. But, it is not for every child and every family. It is a difficult decision to make, especially if you are really concerned with your child's development. I personally always recommend that a child receives therapy from the school since your tax dollars are paying for it. And if you decide to add extra therapy on, I think it's important to understand why you are choosing private therapy for your child, what you hope to get out of it, and how it will affect your family. That will help you determine if the therapy is a success or not.