Raising A Special Needs Child: One Family's Journey

This Week in Our Journey Ending: October 29, 2010

2010-10-29T19:26:00.005-05:00

It's been a while...I've let life get in the way and my original purpose of this blog was defeated. I am going to try to start over, I can't promise anything, but I'll try. It's been a hard week and well the last 6 weeks or so have been hard. After going along for a year and a half in relative calmness we have had a storm around here lately. Megan had to spend the night at school Wednesday, because of her behavior at school. She has had to spend the night in the past, but never for behavior at school. She came home today and said that she almost had to spend the night tonight because of her behavior today. She came home extremely elevated in mood. Jimmy and I are walking around shell shocked. We thought we had finally reached the point of semi-stabilization with her. I know that this is just a bump in the road and the journey will smooth out eventually. Please be praying for us, especially me as I am having a real hard time dealing with this latest bump. I guess that I had convinced myself that the rough part was over and it would be peaches and cream from here on out.

We did carve a pumpkin this week:

And make candy:

I hope everyone has a safe and Happy Halloween weekend! And don't stop fighting for your families!

Temple Grandin Movie on HBO-February 6th

2010-02-02T20:58:00.002-06:00

Temple Grandin, Ph.D., is the most accomplished and well-known adult with autism in the world. Now her fascinating life, with all its challenges and successes is being brought to the screen. HBO has produced the full-length film Temple Grandin, which premieres on Saturday, February 6th on HBO. She has been featured on NPR (National Public Radio), major television programs, such as the BBC special "The Woman Who Thinks Like a Cow", ABC's Primetime Live, The Today Show, Larry King Live, 48 Hours and 20/20, and has been written about in many national publications, such as Time magazine, People magazine, Forbes, U.S. News and World Report, and New York Times. Among numerous other recognitions by media, Bravo Cable did a half-hour show on her life, and she was featured in the best-selling book, Anthropologist from Mars.

Click here for information on Ms. Grandin

This Week In Our Journey: Ending January 29, 2010

2010-01-29T06:00:00.003-06:00

Whew!!! Hard to believe the first month of 2010 is almost over. This week in the Davis household has been relatively quiet. We all have been sick with colds and Megan has missed a couple of days at school. She made it through the week without being on restriction at school so she gets to participate in fun day at today if she makes it school. The only real problem is mornings. I still have not found a way to solve that battle. Megan does not want to get up in the morning and always complains of not feeling well. It is a battle to get her up much less to keep her up. Needless to say by the time she gets on the bus we are all a little on the cranky side.

Keep fighting for your families!

Shame on Me!!!

2010-01-28T19:04:00.003-06:00

I am such a bad blogger. It has been forever since I last blogged. Life just sort of took over. I will not promise to be better this time around because I may not be able to keep it.

We finally got to the school district to agree to send Megan to Bayes Achievement Center in Huntsville, Texas. We are having one of the best years ever. Don't get me wrong. We still have our ups and downs, but the downs are happening a whole lot less.

Last week we switched her from Tenex to Intuniv. It is an extended release version of Tenex that came out in November 2009. Megan's doctor has heard great things about it helping with the symptoms of ADHD. You should start out on the lowest dose and titrate up to the therapeutic dose (somewhere around 3-4mg).

More to come...

I slacked off!!!

2009-05-13T13:51:00.003-05:00

Forgive me, I slacked off again on the blogging. I got caught up in the last couple of weeks of school and finals that I didn't take the time to update here. On that note I finished the year off with an A in one class and a B in the other.

There have been good days and there have been bad days. And the bad days have been bad!!!! More and more lately I really think there is a diagnosis somewhere on the ASD spectrum for Megan. Just the other day, she wanted to bring coffee in for Jimmy. He was not ready to get up yet so he told her "In just a minute" well she took it literally and set the timer on the microwave for a minute. She didn't understand why in a minute when she knocked on our door with the coffee why Jimmy was still not ready, "You said in just a minute." was her response to "Not yet."

Keep fighting for your families...more later!

This Week In Our Journey: Ending April 18, 2009

2009-04-18T19:50:00.003-05:00

Last night Megan went to her first sleepover. I was very nervous. To solve the medication issue I gave her them before I dropped her off. When I picked her up this morning, she was all smiles and reported that she had a good time and made a new friend with one of the other girls there. She did say that she feel asleep at 8 because the meds were making her sleepy. So next time I will have to rethink the medication thing.

The saga trying to get her in to Texas Children's continues. I finally received a return call on Friday. I was told that they would be mailing me a questionnaire to fill out and return. Once they received it, they will grade it and then determine whether she needs to by seen in the Autism clinic or the psychological services clinic. Probably by the time this is all said and done we will be looking at another 3-4 weeks before we can get an appointment. At least this is further than I have gotten the previous two times I have tried to get Megan seen at Texas Children's.

Megan has been very helpful today with housework. She and her dad have been busy all day allowing me to finish up some school work. I really appreciate it!

Tiring kind of day

2009-04-15T15:46:00.009-05:00

I would like to begin by saying that Megan came home yesterday in a much better mood. I was still suffering from my migraine and she cleaned the kitchen for me! Yeah!!!!

Megan had her regular appointment with her therapist today. I was in on the session, and Megan was very impulsive and energetic during the whole session. The therapist was not able to get much done, because Megan kept switching subjects mid-sentence, would leave the area, or would start kissing on me, licking me or patting on me or throwing herself at me. It was very tiresome for me trying to keep her under control. And she kept complaining of being hungry (we ate 30 min. before the appointment). Once we left the appointment we went straight to get her something to eat. After taking one bite she announced that she was not hungry!!!!!! Ugghhh!!!! I took her back to school and informed her teacher of Megan' s impulsiveness and elevated mood level. He said that she has been very hyper since returning from the hospital. At the beginning of the year we had Megan on the GFCF diet and limited her sugar intake. Since going back to college I had been pretty lax since finding GFCF products can be time consuming. After dropping Megan off at school I drove 30 miles to a Kroger store in Spring (which I had been told had gluten free) products. After walking all over the store I found a section of Natural Food Products including some gluten free products. Below is what I bought. I was excited to find pre-made bread! I had been told that they had gf pretzels but I did not find any.

I am going to try being real strict on the GFCF diet again and see if we see any improvement. They only alternative I can think of would be to put her back on an ADHD medicine which makes her even more moody. So keeping our fingers crossed that this works.

In regards to the appointment with the Learning Center at Texas Children's. I called again to day and her file is still being reviewed. I left another message! If I don't hear back by Friday, I am going to call her pediatrician's office to see of they can help speed things up.

Another Glorious (Not) Morning at the Davis Household

2009-04-14T12:11:00.004-05:00

So much for two great days in a row! I myself woke up with a migraine. So having to deal with a moody teenager was not on the top of my list this morning. I was hoping for another awesome morning, and some sympathy and cooperation from her when I explained that I had a migraine. Instead I get "You really don't have a migraine" and "You are lying, b____" in response to "Momma has a migraine, so can you please get ready by yourself this morning." So much for peace and quiet this morning. I was able to keep her somewhat controlled this morning. She did manage to get herself dressed, her hair brushed, but she refused to brush her teeth (that is a struggle I still have yet to come up with a solution too). All the while ranting and threatening me and telling me that it is my fault that she is aggravated (but she could not tell me what I had done). And then like someone switched a light on she went from "psycho" mode to "I"m gonna miss the bus, bye" and out the door she went to wait for the bus and no more problems for the rest of the morning.

This Week In Our Journey: Ending April 10, 2009

2009-04-10T23:27:00.003-05:00

This week has been relatively quiet. Starting yesterday she started throwing up and I do not know if it is from the Lithium or if she has the nasty bug that is going around. When we had her on Lithium for the first time last March she was sick to her stomach for a couple of weeks. So we shall see which it is over the next couple of days.

I am still trying to get her an appointment with the Learning Center at Texas Children's. I called again on Thursday and was told by admissions that the paperwork is still up in the clinic and they could not make the appointment until it was returned to them. Ughh!

Have a Happy Easter and don't stop fighting for your families!

Because He cares for you

2009-04-09T09:52:00.004-05:00

"Cast all your anxiety on him because he cares for you."- I Peter 5:7

That verse has become Megan's verse this week. She asked me on Tuesday night for some scripture that would help her not to worry about how she did on her TAKS test (a challenge for someone who has an anxiety disorder). I wrote that verse on an index card for her to carry in her purse to pull out whenever she needs it. I pray that she truly can cast all her worries on Jesus and that she can rest in His peace and abiding love.

Have a blessed Easter weekend. He is Risen!

Crossing the Creek

2009-04-08T20:17:00.003-05:00

That's the name of the 8th grade graduation ceremony for my daughter. We received the information for it yesterday. It is hard to believe that in just a few weeks my daughter will be leaving one phase of her life and entering into another phase. I look forward to it, but it also scares me. A lot. What is it like at the high school? How will they respond when she has a complete meltdown? Where will she go for her cool off spot? If she doesn't do well in inclusion where will she go? How will her lack of maturity be seen? Etc. So many questions that I hope to have answered before the end of this school year.

On another note, my daughter just got invited to a sleep over. This will be a first for her. She only knows the girl having the sleep over. I am excited for her, but also nervous. How will she do? What if she gets over stimulated? Will the other girls think she is immature? At times she acts very mature and others she acts more like a ten year old. And how do I handle the medications?

Any comments/suggestions would be appreciated.

From this day forward, for better or for worse...

2009-04-07T07:54:00.012-05:00

"I do."

Those two words said after the wedding vow are so little yet so very significant. According to Webster's dictionary some of the meanings of "do" are: to carry out, commit, to give freely, and to put forth. So when you say I do you are really saying I carry out, I give freely, I put forth, etc.

My husband lives the "do" part of "I do" everyday of our marriage. When we said I do six years ago not only did two become one, but we became a family of three. You see I had a precious daughter from a previous marriage. She had been diagnosed as having bi-polar a couple of months before we became engaged. Dear daughter was at her worse during this time period. Jimmy could have walked away and I would not have blamed him one bit. Instead he carries more than his share of the burdens, he gives freely of his love even when it is not so freely given back to him, and he puts forth more into this marriage and family than I have at times. He has stayed by my side during the worse times in our marriage even when some of the worse times meant him getting hit, spit on, yelled at, cussed at, and having things thrown at him by our daughter. He continues to love her and honor me by staying committed to the covenant between me, him, and God.

Jimmy, thank you for being a man of God and for living the "I do" part of our vows everyday. I love you.

What My Daughter Thinks I Want for My Birthday

2009-04-06T16:44:00.003-05:00

On the way home from the doctor's offiice this afternoon, dear daughter and I had the following conversation (We were passing by Splashtown):

DD: Have you thought about what you want to do for your birthday?

Me: Not really.

DD: I want to take you to Splashtown for your birthday.

Me: I don't want to go to Splashtown for my birthday.

DD: But I want to take you and it opens on your birthday.

Me: I have school on my birthday, so I wouldn't be able to go.

DD: Then skip school, because we need to go to Splashtown for your birthday.

Me: I can't skip school.

DD: Oh.

End of conversation.

What Ifs and Only Ifs

2009-04-05T21:34:00.005-05:00

Be still and know that I am God...sometimes that is hard to do. Especially days like today. Jimmy and I are sitting here wondering what brought on today's meltdown. Jimmy took this round while I tried to finish up making the grocery list through tears streaming down my face. It is so hard seeing her this way. The hardest part about it was when she was calming down-she was asking God to please take her home. She says she is ready to go home and that she is tired of being the way she is. It breaks my heart to see her this way. I feel so guilty on days like today and the what ifs and only ifs start up. Like, what if I hadn't married her biological father. If I hadn't eloped then I would not of gotten pregnant, and she would not be suffering the way she is. When I am feeling like this, Jimmy is so great at reminding me that God is in control and that if He did not want her to be born then I would not of gotten pregnant. Psalm 139:16 says that God has ordained her days before they came to be. I am praying that God's hand will guide her and his right hand will hold her fast (Psalm 139:10).

Keep fighting for your families and know that God is God and He is in control.

New Diagnosis Method for Food Allergies

2009-04-03T16:45:00.004-05:00

A lot of parents have children who suffer from food allergies. Nightline had a very interesting article on last night, called Allergic to Everything. A new treatment out of Denver's Jewish Hospital allows children to eat food they once could not eat by rediagnosing them using a series of food challenges.

Click here for the article.

Service Dogs: Not Just for the Blind Anymore

2009-04-03T12:16:00.004-05:00

Dogs are being trained to help more than just blind or visually impaired persons. I am checking into getting a service dog for DD and have found a wealth of information on the Internet. Some examples of other types of service dogs are:

Hearing Dogs;
Mobility Assistant Dogs;
Walker Dogs;
Seizure Alert Dogs;
Autism Dogs; and
Psychiatric Service Dogs.

I have included links to some of the websites I came across. Some places even offer "combo" service dogs that are trained to help persons with multiple disabilities.

disabled children

This Week in Our Journey: Ending April 3, 2009

2009-04-03T09:21:00.004-05:00

I believe that my two previous posts have touched on what all has been going on this week. I will say that DD has received 100's on her behavior chart for the days she has been in school. We have the math TAKS next week and I pray that the stress will not be too much for her. The night before the reading TAKS she had a panic attack. She did go on to pass it. We are proud of her for doing so. Her Language Arts teacher had a 95% passing rate for all her classes, so they are having a celebration today in class.

We have been studying Job the past few Sundays in worship service. Here is a man who lost his family, his fortune, and was sitting in the dump because he was unclean and could not be within the city gates. Through it all he was still able to say to God: "I know that you can do all things, no plan of yours can be thwarted." Job 42:2. Wow! I know that God can do all things and He has great plans for my precious child. I just have to sometimes be reminded of it and that even though things seem bad now, God is not going to let anything or anyone get in the way of His plans.

Been a While: Part Deux

2009-04-03T00:42:00.005-05:00

Can't sleep so I thought I would blog.

As you know we were working DD off of her meds. At the beginning of January we were down to just Risperdal, Tenex, and Lexapro. We went down 1/2 mg on the Risperdal and that was as far as we got. Mid-January she started having meltdowns at home and school. Nothing like they were before, but enough to cause concern. Mid-January through March are always a rough time of year for DD. So working her off any more meds was put to a stop and we actually increased the Risperdal and Lexapro. That helped some but not enough. She was still having mild meltdowns up to about a week ago when they really started getting bad and culminated with her having a major one in the doctor's office and the doctor admitting her to the hospital. The doctor added lithium back into her med mix and told me that I am just going to have to come to the realization that she needs to be on these meds. I am torn as I know that we can have very good days without a mood stabilizer (the six weeks prior to mid-January), but if I take her off again will it only last just a short time? She was released from the hospital on Tuesday. I hate the way she is right now. She is sleepy all the time and she has that swollen look about her again. There has got to be another solution out there...I just don't know what. She sleeps pretty much from the time she gets home until the time she goes to school so I really don't know if she has improved or not. Even though one doctor in the past told me that I should be grateful that she sleeps so much, because the solution to that would be to have her angry all the time. I refuse to let her sleeping all the time be okay. It's not. That leads me back to getting a proper diagnosis. I was told that next available appointment for the Learning Center at Texas Children is in September. I am still waiting for the packet to fill out and return before I can get an appointment so the next available appointment may be past September by the time I can make one. I was hoping to have some definitive answers before she starts high school in August. I am so worried that because of the improper diagnosis that whatever the correct diagnosis turns out to be, the treatment plan we start will be too late to do her any good. I am so angry with myself for being so naive and trusting in thinking that the doctors (five of them) were correct in saying that she was Bi-Polar. They are suppose to be the experts afterall, right? So why not trust them. Her current doctor has migrated away from that diagnosis and on her discharge papers listed her Axis I diagnosis as Mood disorder NOS (not otherwise specified). I hope I am making sense and not rambling on. I am just frustrated.

I am still believing God to work a mighty miracle in DD's life and to bring back my precious daughter to me. Have a blessed Friday.

Been a While: Part 1

2009-04-02T20:12:00.001-05:00

So much for blogging on a regular basis! Going back to school has taken up a lot of my time. I am going to try to blog on a more consistent basis for now on. I don't have a lot of time so I will try to bring this blog up to date in parts.

Where to begin to bring everyone up to date without writing a book. Let's see. We finally were able to get the psychological evaluation completed. I feel that in some aspects it was a complete and total waste of time. When we went to the feedback session to go over the results, the doctor said to take his diagnoses with a grain of salt because he is not even sure he got it right. As of right now she is diagnosed with having: major depressive disorder, generalized anxiety disorder, cognitive disorder nos, and oppositional defiant disorder. He also put in that we need to rule out mood disorder based in a neurological defect and pervasive developmental disorder. He also said that if she is diagnosed with PDD then the first two diagnoses would just roll up under that. So I am in the process of trying to get DD into the Learning Center at Texas Children's Hospital and feel that it is going to take an act of Congress to get it done. I have to say that her pediatrician's office has been very helpful in getting the referrals done and keeping me up to date.

More on the journey tomorrow....

Till then don't stop fighting for your families. Nehemiah 4:14

This Week In Our Journey: Ending January 2, 2009

2009-01-02T16:02:00.003-06:00

Okay-typing 2009 took a little thinking! It is hard to believe the new year is upon us. I have great expectations for this coming year for DD. I am believing God that He will continue to work a miracle in her life and that she will continue to have great days, weeks, months, and years to come.

The year ended a lot better than it began for DD. She finished up school with 2 great weeks and the holidays have been so pleasant. I can't remember a Christmas holiday in which there was not some sort of conflict, meltdown or some other issue. We even went on a four hour, multi-store, multi-stop shopping trip and I enjoyed it. She was so pleasant to be around. It felt--dare I say it?- "Normal". She finished her depakote on December 28. We go back to the doctor on January 9 and will proceed from there. She goes back to school next week and on January 12 she will start going to a Gen. Ed. Science class.

Blessings to you and yours in 2009.

This Week in Our Journey Ending: December 19, 2008

2008-12-21T21:26:00.004-06:00

This week was awesome! DD had another great week! That makes 2 weeks in a row!!!! Yipee! She was even in one gen. ed. class this week and stayed in the class the whole week! The lowest grade she made on her behavior chart was a 97!!!!! We are so proud of her. We also started titrating down on the Depakote and she should be completely off of it by December 29. We are praying and believing that God's glory will be seen through this in a big way and that DD will not have any negative side effects or any rebound episodes. I am hoping to be able to go to DD's psychiatrist in January and be able to tell her only great things! God is awesome and I am believing Him in a big way!

In regards to the school, I received a response to my letter regarding the training/experience of DD's teachers in regards to her disorders. They could not find any such records. So I will be requesting training for DD's teachers. Also in regards to the evaluation that is missing out of her special ed folder, well I have now received two different stories from the district. One saying that they remember the evaluation being in her folder and another saying that I never gave them the document (and that was from the same person). I don't know how to fight the he said, she said that is transpiring out of this, but I distinctly remember sitting in the principal's office along with the counselor and giving them the report along with discussing a possible additional diagnosis of bi-polar. That was back before I knew to document everything. So a lesson that everyone should take from this is to document everything! If you have a meeting, send a letter confirming what was discussed in the meeting and any documents that were given at that meeting and that you expect them to be placed in your child's permanent education file.

I hope everyone has a very Merry Christmas!

First Attempt at Making Gluten Free Bread

2008-12-21T21:25:00.001-06:00

I went out and bought a breadmaker this past week to make gluten free bread. This is the results of my first making. The top was not completely done and there was no way to add any time to the cooking. Otherwise DD enjoyed the part of the bread that was done and had several sandwiches in her lunch this past week.

This Week in Our Journey: Ending December 12, 2008

2008-12-12T21:53:00.004-06:00

DD had the best week so far this school year! No outbursts at school and did very well on her behavior chart!!!!!!!! Praise God!!! As of Monday, she is totally off her lithium. So that makes 3 medications she is now off. Wednesday it snowed!!!! DD loved it and made a snow angel and threw snowballs. Today we had our third ARD meeting for the year. I feel that we made the most progress as far as IEPs and BIPs in several years. The district support teacher who was assigned to come in and help did just that. We have had several in the past who have not made any new suggestions and one even said she was at a lost as to what to suggest. This one has spent several days observing, getting to know and working with DD. Tonight we went and saw Bethlehem City at our former church and then went and saw the Dearing Dazzle light show. This has been our third year for doing both and has become a Christmas Tradition of our family.

Have a great weekend!

Snow in Kingwood

2008-12-11T07:14:00.000-06:00

We had several hours of snow yesterday in the area! It is a pretty big deal when it snows around here. The HS students after church last night had fun having snow ball fights.

Gluten Free, Casein Free Pancakes

2008-12-08T14:08:00.002-06:00

Thanks to my mom sending DD some gluten free products, DD had pancakes this past weekend. She liked them so much she wants them for breakfast every morning. This particular brand is Bob's Red Mill and it comes in a 22 oz bag. There is a store locator on their website to find stores that carry their products.

It calls for 1 1/2 cups of the mix and 3/4 cup milk. The batter was a little thick, so next time I am going to increase the milk to 1 cup.

Burkhart Center for Autism Education and Research

2008-12-05T21:56:00.002-06:00

In doing research for DD's upcoming ARD I found the website for the Burkhart Center. The Burkhart Center is part of Texas Tech's College of Education. I found a wealth of information on it, especially related to behavioral issues. Some of the information was new to me. I am adding this to my links section. I definitely recommend visiting the following modules:

Module Two: Communication

Module Three: Social and Behavioral Issues

This Week In Our Journey: Ending December 4, 2008

2008-12-05T18:55:00.003-06:00

This week was relatively calm. DD really did not have a good week at school, but at home things went well. We had an appointment with her psychiatrist yesterday. We are working her off another medication starting today. By the end of December she will be off a total of two more. I am excited and nervous at the same time. I pray that she does well off her medications and that we can manage her behaviors through therapy only. I am starting prep work for next Friday's ARD. The LSSP called today and said that the behavioral services survey is complete and she wants to meet with me next week to go over it. I am going to have her send home a copy for me to review prior to the meeting. I am curious as to what it says as I did not get a good feeling/vibe from this particular LSSP when she called me a few weeks ago.

I hope everyone has a wonderful weekend.

Interesting Article on Brain Waves and Language in Autistic Children

2008-12-02T12:31:00.003-06:00

Brain Waves are Window in autistic language woes

A Chocolate Sort of Day

2008-12-01T18:37:00.005-06:00

Yesterday was one of those days. It started when DD announced very early on that she wasn't going to church. We worked through that and off to church we went with her gift for Angel's Of Light. At church she had a melt down. She even told me that she wasn't going back to her bible study class because the kids were throwing food at her. So I called her bluff and said "Let's go over there and talk to them about this. I want you to show me the kids who did it." She replied, They will just deny it." I was so embarrassed by DD's behavior. Who knows what they think of me as a parent. After days like this I just don't want to go back. I ended up sitting in the car with her while Jimmy went to worship service. After a few minutes she calmed down and wanted to then hug and kiss on me. We told her that as a result of her behavior at church she had to spend the day in her room. She spent most of it banging on the wall. We still had to go grocery shopping so it was decided that I would go to the store. That set DD off because she wanted to go. Jimmy told me to go ahead and go and that he would handle this outburst. So I pulled out of the driveway to a child screaming at her father. What fun! After walking around Wal-Mart for a while I finally got groceries and a Hershey's bar at the check out line. Not on the diet, but I needed it.

I can't think of what would have triggered this meltdown unless it was just over stimulation from Thanksgiving, getting the tree out on Friday and shopping on Saturday.

To end this post on a positive note-DD had a great day at school today! One down and four more to go!

Upcoming ARD Meeting

2008-12-01T12:38:00.001-06:00

We have an ARD on December 12. I sent to DD's special ed teacher a list of the changes/additions that I want to her IEP. He called me back and said that they all look very good and he would write them up in draft and send them to me. Hopefully the rest of the ARD committee will agree!

This Week in Our Journey: Ending November 29, 2008

2008-11-29T17:07:00.003-06:00

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

2008-11-24T16:07:00.005-06:00

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

2008-11-24T08:24:00.004-06:00

"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

2008-11-21T18:31:00.001-06:00

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

2008-11-20T18:07:00.002-06:00

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

2008-11-20T14:56:00.003-06:00

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.

2008-11-19T12:58:00.002-06:00

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?

2008-11-19T07:40:00.001-06:00

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

2008-11-18T11:12:00.001-06:00

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

2008-11-18T11:11:00.000-06:00

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

2008-11-17T14:14:00.004-06:00

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!

2008-11-16T21:48:00.002-06:00

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

2008-11-15T10:20:00.002-06:00

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

2008-11-14T14:00:00.003-06:00

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.

Notebooks Part 2: ARD Notebook

2008-11-14T10:58:00.002-06:00

Today I am going to give you the layout of my ARD (Admission, Review, Dismissal) notebook. Again these are just some suggestions for what I have found useful. You can customize your notebook to fit you and your child.

Tab 1: Current IEP

You want to have your child’s current IEP at the front for easy access.

Tab 2: Previous IEP

Tab 3: FIE (Full and Individual Evaluation)

Tab 4: Other School Testing Reports

You can place any other testing reports in here such as an ADHD report

Tab 5: ARD Notes

I keep notes of all ARD meetings in here. On my notes I list who all was in attendance at the meetings also.

Tab 6: School Records

I keep behavior charts, restraint letters and progress reports here

Tab 7: Referral Reports

All disciplinary referrals are placed here

Tab 8: Report Cards:

For the current school year

Tab 9: IEP Progress Reports

For the current school year

Tab 10: Correspondence

I keep all letters I have sent to the school and all e-mails for the current school year

Tab 11: Miscellaneous

Miscellaneous documents go here.

Keeping Notebooks

2008-11-13T14:33:00.002-06:00

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

2008-11-13T02:00:00.005-06:00

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

2008-11-12T15:05:00.008-06:00

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

2008-11-12T12:56:00.009-06:00

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.