This Week in Our Journey: Ending November 29, 2008

I am a day late posting this blog, but this week has been busy.

Tuesday, DD did not go to school because she had a stomach bug. Wednesday was spent doing the preparations for Thursday. Thursday I was banned to the bedroom because I caught the stomach bug. DD did a great job in helping Jimmy with the cooking. My mom stopped by briefly and brought DD a goody box of gluten free stuff. Friday was our annual day to put up the Christmas tree and inside decorations. We had fun especially since we had my 2 yr. old niece over to help us. This morning, I had one of those we did right moments. We were getting ready to go to the mall to do some Christmas shopping, and I walked out into the living room to see of DD was ready. She was and she told me that she wanted to spend the $10 that she received as an early Christmas gift on someone else who needed a Christmas gift. Our church has an Angels of Light program every year in which we bring in inner city families provide them with a meal, the message, groceries, clothing vouchers, and toys and she decided to give a toy for that. We took her to Wal-Mart to pick out a gift. She had $2 left over and she put it in the Salvation Army kettle. This is very generous of her since most of the time she want to spend her money right away and all for her. Jimmy and I are very proud of her.

Frustrated with School

I am so frustrated with the school right now! I really don't even think they are trying to work with DD. She is in a self-contained class right now (she being the only student). Since she has been in there her grades have dropped and she sleeps a lot. She told me that they encourage her to take naps. They even brought in a bean bag and sleeping bag for her to do so. On a regular basis I get calls from them with her yelling the background. It generally happens when they are trying to get her to do work. I am beginning to think that they don't make her unless something is said from some one outside the class (pure speculation on my part). I have sent a letter to the school principal asking for another ARD. We will see how it goes. I have several additional items that I want added to her IEP, plus I want her back in gen. ed. classes with an aide assigned to her full time. I probably won't get the aide and I'll just send them a letter asking them why they have denied it (Prior Written Notice). I asked for one last year and was told that some one from District Support has to recommend it and the district support person who was there said that while she is out of ideas she is not going to recommend an aide at this time. I did not know about PWN at that time so I did not send the letter. I will this time.

In my research I have found a wealth of information regarding school related issues. They have called out district support and the Autism Support Team and the only thing they have come up with is to put black tape on the floor to help DD with her boundary issues. I even sent them some information from the TEACCH site regarding High Functioning Autism and was told that they would implement the ideas in it. So far they have not. I will be requesting that some of the ideas presented in the document become part of her IEP. I can see that this is going to be a long ARD meeting!

I feel better now after having rambled for a bit. It all gets to be a bit much at times!

An Attitude of Gratitude

"in everything give thanks; for this is the will of God in Christ Jesus for you." I Thessalonians 5:18

As we are approaching the Thanksgiving season and with the uncertainty of the economy Paul reminds us in I Thessalonians to give thanks in everything. We are to give thanks when...


our child yells at us;
our spouse doesn't meet one of our needs;
an unexpected bill arrives;
our car breaks down ...

I know you are probably thinking how can I possibly give thanks in those circumstances? But we are. Paul tells us in Philippians 4:6 to "be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made know to God." So this Thanksgiving, we should do the following:

thank God for the child He has blessed us with even when she yells at us and ask for wisdom and guidance for in raising her;

thank God for the spouse He has blessed us with and ask Him to help us to develop "agape" love for our spouse;

ask God to provide a way to pay for that bill and thank Him that He is Jehovah Jireh;

thank God for blessing us with a car and ask Him to provide a way to fix the car.

This Week In Our Journey Ending November 21, 2008

DD had three good days at school. Today would have been a good day also, except they told DD that the principal at her school went into premature labor yesterday and the baby did not make it. DD had formed a bond with the principal last year and she was quite upset about the news. She had a meltdown at school. Of course the 3 different times I talked with the school no one informed me of what had happened to the principal and that DD knew about it. I was just told that DD was not co-operating. DD told me about her principal when I picked her up early from school. No wonder she had a rough day. She was reacting the only way she really knew how. She has difficulty verbalized her feelings.

The lists I have made for at home are working. She even asked me last Saturday to make her a Saturday list like I made her for school. I am still trying to find gluten free bread. I did find at HEB a whole section of gluten free bread mixes and some gluten free pasta. My mom said that she will get a bread maker so that I can make DD some bread.

Other than the above and what I posted early, this week has been pretty uneventful.

Please be praying for DD’s principal, her husband, and their family.

Use of Antipsychotics in Children Criticized: NY Time Article

A committee of Federal Drug experts says that "Powerful anti psychotic medicines are being used far too cavalierly in children, and federal drug regulators must do more to warn doctors of their substantial risks." Mentioned particulary are Risperdal and Zyprexa. For the full article click here.

Brain Break

Comment made by DD on the way home from church last night (or what part of it we went to):

"I can't wait until Thanksgiving Break. I need a break. My brain needs a break to re-organize."

Don't we all need a brain break every once in a while!

The story behind the verse on the bottom of the blog.

About three Thursdays ago, I put my daughter on the bus after a hard morning. As I was getting ready for my bible study class, I started sobbing and crying unto the Lord. I was tired of fighting for and with Megan. I had been involved in some kind of fight for her since before she was born over 13 years ago. I remember telling my God that I was tired and weary and that I could not go on. I cried so hard and long that by the time I got to my bible study class an hour and half later my eyes stung. During the second session we come together as a big group to watch a Beth Moore video. Within a few seconds of the video starting the first verse Beth mentioned was Nehemiah 4:14 and to not stop fighting for our sons, daughters, and our families. I started weeping again (and am now as I write this) because God told me that I should keep fighting for Megan. I know that I may not see the fruits of my battle on this side of heaven but I am convinced that I will see the fruits on that side.

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up” Galatians 6:9

And parents we are doing good in our children’s lives and the harvest is yet to come. I know that my God is a big God and He can do glorious things in our children’s lives and our lives.

Would You Like Some Cheese With That?

This morning as DD was getting ready for school she was whining about several things, thus the following conversation:

Me: “Would you like some cheese to go with that whine?”

DD: “You can have cheese with wine?”

Me: “Yes”

DD: “Red Wine?”

Me: “Yes”

DD: “That wine that starts with an F?”

Me: “Yes, you can have cheese with all types of wine.”

At least it got her to stop whining!

Notebooks Part III: Research Notebook

Research Notebook:

In this notebook I put all my research I have done on DD disorders, IEP, behavior modifications, social skills, legal stuff relating to school issue, etc. You can break this notebook down as simple as you want it to be.

Learning to Embrace

While all us mothers of special needs children mourn the “normal” things our kids will not be able to do or the “normal” things we cannot have /do in our parent/child relationship, most of us have come to embrace our children for who they are. They can show us a whole new world through their eyes if we let them. We need to learn to love the good days better than we hate the bad days. And to feel blessed that God gave us the gift of being a parent while explaining for the hundredth time why something is the way it is.

Trying to Get Appointment With Texas Children's

Just received a call from the Blue Bird clinic at Texas Children's. Based on the paperwork (ARD, school evals., and psychologist progress notes) that DD would not be best served having a neuro psych eval done. She referred me to the Autism clinic at Texas Children's. I called the Autism clinic and they have to review all the papers that the Blue Bird clinic is sending them first, which can take 7-10 business days. If they decide to see her then it will be sometime between March and June 2009 before I can get an appointment. I am praying it will be closer to March than June.

Whew! I'm tired!

Don't take me wrong. We had a good day. DD was just overstimulated all day. She found out in SS at church that one of the junior high workers went into labor yesterday. She is very excited about it. All day she kept clapping her hands rapidly, rubbing her hands together, flapping, and hitting her legs and chest with her fists. She wore me out just watching her. I kept trying to redirect her but it just was not working. Other that that, we had a good weekend considering we ran errands both days. No fits, no outbursts, no aggressive behavior, and no cussing!!!!! Now if the same would go for this week at school! I'm believing God for it!

Article on ADHD & Executive Functions

This article was forwarded to me by one of the groups I belong too. It talks about how executive functions not inattention are the defining trait of ADHD.

ADHD Primer for Parents Part I

This Week in Our Journey: Ending November 14, 2008

What a week! We met with her psychiatrist on Tuesday and discussed taking DD off some of her medications. The doctor advised against it saying that she treats children on the spectrum with the same medications she treats bi-polar children and that it is not uncommon for children to be on 5 or 6 meds at one time. I believe that DD is overmedicated and want to see what she is like off of some of these meds. Plus the psychologist cannot do an accurate evaluation with her on all of these medications.

DD had two good days at school. Wednesday through today have been rough. She started sleeping a lot more (took her off Daytrana on Tues.). I think all of the meds she is still on make her sleepy. When she has been awake at school she has been moody and aggressive. At home she has been manageable. I sent DD with a list on Monday to look at frequently. I wanted it to be on her desk for her to review frequently but they placed it on the wall. I read an article on TEACCH about the importance of lists for high functioning children on the AS. How can it work for her on the wall?

I am thinking about going to school one day to observe how they teach/interact with DD and see exactly what triggers DD to get upset at school. DD for the most part can’t remember or tell me what triggered her to have a meltdown and her teacher isn’t that great about it either. Hopefully they will be open to any suggestions I can offer. They are the ones saying they are a loss as to what to do.

At home the lists I have made for her are working. She comes home and first thing looks at her “Afternoon Routine” list to see what she should be doing. I am also working on boundaries (we are having a real problem with it lately). I posted a note on my bedroom door saying “Do not enter without permission.” She thinks its okay to go into my room anytime she wants. I think it is very important for DH and I to have some privacy and a place we can go as a refuge, so to speak.

This week I have also been working on eliminating some behaviors I don’t like. In the past I have gotten on to her, told her to stop and that they are not appropriate behaviors. That has not worked. I have started to look away when she is doing a behavior I want to stop. So far it is working. Consistency is the key.

I hope everyone has a great weekend. We have a cold front coming through tonight and tomorrow is suppose to be cool and breezy! Yeah!

I am praying for God to show His Glory through DD and that He will work in big ways in her life.

Keeping Notebooks

Keeping notebooks for your child is very important. In here you will keep important documents, notes, information relating to your child’s disorder and it makes for easy access should an emergency arrive. I have three. One for “Medical” stuff, one for research that I have done, and one for “ARD/School” related stuff.

In today’s blog I will discuss the Medical Notebook. These are just some ideas. You can customize your notebooks to fit you and your situation.

Medical Notebook:

Tab 1: Appointment Notes:

I take notes at each appointment. Especially relating to medicine changes. You can be under stress during the appointment especially if you had to wait awhile and your little dear is more that a little impatient about the wait and easily forget what the doctor said. Write down any specific directions here too. I also write any questions I might have for the next appointment in here.

Tab 2: Medication Records:

I have one chart that is for all her current meds and dosages. I have charts for each year dating back to her original diagnoses detailing the medicine and the months she was on it. Leave me your e-mail address in the comments sections with a request for these charts and I can send them to you.

Tab 3: Medical Records:

In here I have copies of any special reports, lab reports, hospital discharge papers and any other medical record I have been given a copy of.

Tab 4: Previous Providers

I have a list of all doctors, therapists, and hospitals their address and phone number that has seen my daughter.

Tab 5: Miscellaneous:

In here I keep any miscellaneous documents, such as articles I might want to discuss with my daughter’s provider.

Morning Clothes Battle

Here is an idea that has helped out with morning routines around my house. I went out and bought a 5 drawer cart on wheels. (I got mine from Wal-Mart for about $20) Each Friday (or laundry day) I put in a weeks worth of clothes (with help from DD) including undergarments, socks, and any accessories with each day being in its own drawer. That way in the morning I am not battling with her on what to wear. She has already picked it out and just has to go to that day's drawer. It has helped a lot especially since she is so hard to wake up in the mornings and get going. Hope some of you find this idea helpful and that it works for you!

In Search of Gluten Free Bread

We decided to start DD on the gluten free casein free (GFCF) diet this week. DD wanted a peanut butter and jelly sandwich in her lunch today. So after getting her off on the bus, I set out to what I thought would be a quick trip to Target. Ha Ha! Four stores later and still no loaf of gluten free bread I gave up for the day. I do have hope in that H-E-B does carry gluten free bread, they were just out today.

If anyone has any recipes, ideas, links, or places to go to buy GFCF products please feel free to share in the comments sections. Particularly school lunch and snack ideas.

Before you decide to start your child on any special diet be sure to consult your child's doctor or the very least a nutritionist to make sure your child is getting the adequate nutrition he or she may need.

Lessons Learned

Below are some hard lessons that I have learned and hope that they will help/give you some things to think about in your journeys. I am not a doctor and in no way should any of the advise listed below be construed as such. These are simply things I learned as a mother.


1) If you don’t feel comfortable with what a doctor is telling you get a second opinion. Make sure comprehensive psychological and neuro-psychological evaluations have been conducted on your child. Not just 15 min. with a psychiatrist to diagnose your child. It can take time to accurately diagnose your child. See if the psychologist will observe your child in settings (home/school) other than their office.


2) Before putting your child on medicines for psychological issues be sure a good medical doctor has ruled out any underlying medical conditions (ex: thyroid conditions can cause hallucinations) and any allergies.


3) If you child has been through a traumatic experience (abuse or ) be sure that Post-Traumatic Stress Disorder has been ruled out. Children suffering from PTSD can exhibit bi-polar like mood changes especially if left untreated.


4) Don’t count on your doctor or pharmacist to fully inform you of all you need to know about your child’s medication and any interactions. Do the research yourself. There are drug interaction tools online. Print the responses and ask questions if you don’t understand. Some , like lithium, need to be taken consistently either with or without food to decrease the chance of lithium toxicity. Stay with one pharmacy also.


5) Be leery of a doctor who always has drug reps in their office and meals brought in. I had one that the office staff never had to buy their own lunch. They had drug companies lined up everyday bringing lunch in for them. Chances are they are more likely to push the latest drug than what is right for your child.


6) If you are on Medicaid and the school is conducting evaluations, make sure you give them a letter telling them that you are not authorizing them to bill Medicaid. Because if you don’t they will and you will then have a heard time getting Medicaid to pay for private evaluations. Medicaid will pay for one psychological evaluation a year. You want to be able to use it to get your own outside evaluation done, especially if you don’t like the results of the one the school did. IEEs paid for by the school are done on the schools terms and agenda not yours.


7) Think out of the box. If conventional behavior interventions are not working for your child at school do some research on Pervasive Developmental Disorders. Not saying that you child has one but there are a lot of behavior issue related ideas out there for Pervasive Developmental Disorders that could work for your child.