Looking back I can't believe it has been over a year since I last posted an update. So starting chronologically, I asked TRex's pre-K5 teacher if she thought he could handle kindergarten at PCA.  She said no.  Luckily TRex still had his IEP from RISD.  After discussion with ACM, which is one block from the house, TRex was the first child to enroll for kindergarten starting August 2013.

With that decision made, I did not think that the private speech therapy was providing anything to TRex so I stopped it.  However, I had been intrigued by a different therapy that the ST talked to me about, "Social Therapy".  This lead me on a chase of who provides Social therapy.  Here in Dallas we are fortunate to have the Shelton school and the UTD Collier Center.  TRex started at the Collier  Center halfway through the spring 2013 session.  The therapists are amazing.  TRex understood the concepts and we continued there through the summer as well as picked up sessions at the Shelton school.  I cannot say enough about both providers. 

They introduced the concept of "Space Invader" - don't smother classmates.  They taught about bullying as well as how to start conversations, etc.  The Social Detective class material by Michelle Garcia Winner was very effective. 

The Collier Center introduced me to MERLD - Mixed Expressive Receptive Language Disorder.  I believe this is what TRex has.  He never fit the ASD/Autism description nor the ADHD description.  A great write-up on MERLD is available at MERLD World.   I have also found a wonderfully supportive online community of mothers who are going through the same experiences.


TRex continued showing progress with neurotherapy.  We went the Spring of 2013 as well as the summer and fall for 20 sessions each.  The composite QEEGs are shown below.

I am amazed at how closely his QEEG tracks to the behavior and symptoms TRex has shown.  The red in the center of the left most image on the second row corresponds with working memory.   The reds on the top row corresponds with short term memory.  I will post a layout of the brain map this week to show what all the areas correlate to.  I suspect we will be finished with neurotherapy by the summer.

I also started TRex on a nutritional supplement, called Attentive Child..  This has had am amazing impact on TRex's ability to focus.  We call it his smart pill.  The active ingredient is DMAE.  I take it too. :)

If I were to be asked by another mother with a child with MERLD, what would I recommend my answer would be: 1. QEEG guided neurotherapy, 2, Attentive Child, and 3. Social Therapy.

I am giddy!

This has been an amazing couple of months.  Just reviewed the results of TRex's followup QEEG.

The doctor feels that the reds should be remediated by 20 more training sessions.  To say I am thankful is definitely an understatement.  The remaining reds are in the area associated with focus and verbal processing - which are the areas where TRex has issues.

Some of the highlights in TRex's development:

1. He constructed his first Lego set by himself.  TRex finally showed an interest in watching a movie - just so happened to be at neuro with Ms. Lynsey.  He loves Toy Story and has watched it many times.  I remembered that I had bought him a large block lego set that had a train and was Toy Story themed.  I verbally stepped him through each step the first day.  The second day I had him follow the printed picture instruction - and he got it!  I have sense bought him 2 more and after he puts all three together today we will move to the next degree of difficulty blocks.

I am amazed at how far he has come in two week.  I still have to prompt him but it is becoming better.

2. His teacher told me this week that he tied for first in the sight word competition in his class!  Yay TRex.  He is reading 3 and 4 letter words to me at night.  We have a weekly outing to the library Sunday afternoon which I hope instills a love of reading.

3. TRex is beginning to understand actions are rewarded.  Could be good or could be bad.  The doctor said that using rewards are good.  For instance, I asked him to do his Legos before going to karate and he said no after.  I said OK I guess we are going in the white car...because I know he wants to go in the red car.  He immediately understood and said How about I do the Legos now.

End of year status

TRex has continued with his neurotherapy protocols.  This next week I schedule his last two of the 25 sessions as well as his follow up QEEG.  He started twice a week speech therapy this week with Ms. Ashley.  She assigned two things for homework for the first session.

•                 When talking with TRex, if he doesn’t look at you gently tap his wrist and say “Look at me when talking”.  As time goes on, we should be able to do this less.

•                 Ask him to describe what is happening in a picture.  We will start with a new book tonight and ask him to tell me what he thinks is happening in the story.  

After the second session of speech therapy Ms Ashley again assigned homework:

•                 Sequencing – Have him verbally tell you the steps in a familiar process such as how do you brush your teeth.

She has also started a social skill building exercise.  They play the “Who am I game”.  She had him guess who she was with her giving him clues for instance a fire fighter.  Then he had a turn at giving the clues.  TRex plays iSequence on the iPad at home.  I am working with him to verbally tell me the steps as he is progressing.  Ashley said that after he completes a sequence, I should ask him what would be the next step. 

This month has shown a remarkable increase in language skills.  Remarkable enough that I notice even though I see him all the time when he isn’t at school.  A couple of examples follow:

1.                Last week on the way to basketball practice, he said “Momma you don’t have to come in.  I know what to do.  I am a big boy.”  I laughed and told him I am his mom and I AM coming in. 

2.                He told Santa Claus exactly what he wants for Christmas.   This is the first time he has ever said anything to Santa.  Ever.

3.                He has also gone into details about how Santa brings presents down from the roof and puts them under the tree.  He has never discussed with me before though I have talked about Santa in previous years.

4.                Yesterday on the way to neuro, TRex  says “Mom look at that car.  It is a mini cooper but it looks like a race car.”  This was a very good description of the vehicle.

5.                On  the way back from neuro, he said in a mature voice..”Mom I need to tell you something.”  This caught me off guard so I turned down the music volume and turned around and asked "What?"  He said "Mom I don't want school lunch.  I want to take home lunch."  I was a little taken aback since he has wanted to have school lunch this year.

I said “ You know that means you won't get ice cream and pizza on Friday?” and he said “I want school lunch on Pizza and chicken nuggets but the rest I want home lunch.”  I asked him why the change and he said “Wyatt and Riley bring home lunch. “  The he added “I want school lunches on Pizza and Chicken nugget day and the rest home lunches.”  I am amazed.  he is being social and is using his language in a very mature way.

What are the coincidences that he has this language spike on the week he started speech therapy?  He has had speech therapy as part of his PPCD program when he was 4.  I believe this is a combination of the two therapies together.  I can hardly wait until we see the QEEG results mid-January.

Moving into the second round of Neuro training

TRex has completed 3 of the 5 sessions for the new round of 25 session neurofeedback.  The protocols were selected from his QEEG.  All three have gone well and he is enjoying going back to the routine from this summer.  Lynsey asked me what I had thought of the results.

These two pictures show the QEEG prior to the first 25 sessions and the QEEG after.  Raw data is taken and then normalized for a "normal" person of the same age.  Green is ideal - the brain waves are not too fast and not too slow.  Red is very fast - which isn't good (think hyperactivity and having too much data to handle.).  Yellow is in between red and green.  On the other side, dark blue is a lot slower processing and light blue is in between.  Notice how many different frequencies have gone mostly green.  Also the two bright red maps have cooled, they still have some red but have shown tremendous improvement.  There has been some degradation in  the three top middle frequencies but overall I was impressed and it matches what we are seeing at home as well as at school.  I am looking forward to seeing the QEEG in January.

I told her that I was elated to have data to show that there had been a big improvement but that also shows there is still more improvement to go.  Prior to the results, I was afraid that they were going to say we were done and basically tell us to move along.

TRex has been doing amazing work with his letters, his numbers, and drawing.  He does NOT like to color AT ALL.  He attends worship with his grandmother after bible class on Sunday mornings.  She brought home the following drawing that he did on his own (without her encouraging him).

I asked him who it was a picture of and he said "It's Dot and her cat".  I asked him what is Dot's cat's name and he said "Mit." HAHAHAHA.  We have been reading the BOB books.  Or rather he has been reading them to me.

We worked on the "at", "it", and "id" word families and he can now read them.  I love how he sounds out the parts and then we say put it together and he uses his hands like he is squishing the letters together and says the word.

We also worked on simple addition.  I write the equation such as 1 + 1 =.  Then I have him put the appropriate number of dots under each and then he gives me a total and then writes it in the proper place.  He was so proud when he showed his Poppa all that he had done today.  I have to say that this Momma is proud too.

And the results are...

This week was a tough one for this specific mother.  My hope is that TRex will not be limited by any of his past issues.  I am thrilled that we can talk about things, he can tell me about his feelings, he can tell me what he did in school, etc.  However, underneath I know he is still not totally like other children yet.  The doctor had asked me to talk to  his teacher for feedback on how she thinks he is doing.
So I asked her "In your opinion, does he still struggle compared with his peers in understanding verbal instructions, staying on task, or in his ability to relate to his peers/make friends?"  In my heart of hearts I already knew the answer but still the answer was depressing anyway.

“I have concerns in the areas that you mentioned.  TRex is struggling with understanding verbal instructions, I usually do not give him more than two commands to follow, I do have to give him lots of prompts.  He is also struggling in his ability to relate to his peers.  I do not have any concerns regarding his academics – one on one he is great and he knows his stuff. “

On a very positive side, he is very bright and he DOES know his academics.  I had also had correspondence with the school’s educational lab leader.  She had attended the meeting with the public school teachers who had set his goals and objectives the previous 18 months.  I reviewed with her that TRex had completed the PPCD program and if he was going to proceed in public school he would have been discharged to general population kindergarten with only one hour of speech therapy support.  I had made the decision to continue with private school so that he could delay kindergarten by a year.

After the email exchange with his current teacher, I emailed his PPCD teachers to see if they had input.  They both said that TRex continues to be a visual learner and can master anything as long as it is visually modeled.  He will struggle for a while verbal instructions only.

Anyway, with all of the inputs, I was not really looking forward to the meeting with the doctor.  I have seen the improvements but I wonder sometimes  if I am finding more encouragement in it than is warranted.  However, even the educational lab leader said that he has made much progress.
I was very happy to see the results of the comparison of the two QEEGs.  There was remarked improvement but there are still some red areas – areas that effect verbal processing and logic.  This matches up with everybody’s observations.  I was so worried that the doctor was going to say – everything’s great now, move along.   We are moving out targeting the areas that still need help with 25 more training sessions.  And I am very happy to do so.  I am very thankful that they haven't given up on TRex.

Waiting on the results

TRex had his follow up QEEG a week ago Friday.  I am eagerly anticipating the results at the appointment Thursday.  I don't think I will be surprised by the results as I could see it going either way.  He still has some focus issues so I wouldn't be adverse to continuing therapy but he does stay on point much of the time now - and I need to stress that he takes NO MEDICATION.

As I write this entry, I can hear him in the kitchen with his grandmother making pies to take to church.  He loves cooking with her and follows instructions.  He now reminds me if I don't read him a book at night because he likes the stories.  He picks out the words he knows as sight words.  He likes the weekly drawing for the letter of the week.

C is for Crab

S is for Shrimp

TRex has no issues communicating.  I think he goes into jargon to irritate me and he thinks that is fun. This week he came home from school laughing saying that one of his girl classmates was on the frowny face board at school and she was saying "Please don't call my mommy."  I let him laugh a while and then told him that if his teacher called me to tell me TRex was on the frowny face board, TRex would not be able to go to karate that week - and that got his attention.  I love that he tells me about his day and understands what I am saying in the conversation and can apply it to himself.

This week was a review of the 5 letters of the week thus far in the school year.  As per our bedtime routine, I asked TRex if he wanted to brush his teeth in the bathroom or in his bedroom.  He said "Momma, B B, bedroom and bathroom both start with B."  I was pretty excited about this and thought I would carry on the conversation by pointing out he was carrying a book so I asked him "That's right, what do you have in your arm that starts with a B?"  He replied "Bones, Momma, I have bones in my arm!"

His teacher told the class that Mrs. Owens was going to substitute the next day and TRex said "Mrs. Owens loves me!" HAHAHA!  I guess he was excited about seeing her.

And we're done with the training...bring on the QEEG

TRex's last training session was uneventful.  He handled it like a pro.  The conversation with the doctor afterwards was very interesting.  He asked me on a scale of 1-10 what was the improvement and I said I don't think I can say but I can give you another measurement.  In May I was lucky if TRex were able to concentrate on a task for 5 minutes.  This week he colored and decorated his poster for 20 minutes.

I told the doctor that I was concerned because of my conversation with the room mom the day before.  Her child had trained at the same age as TRex but 5 years later is having issues and is on ADHD medication.  How do I know if and when I need to bring TRex back if the QEEG shows everything is in the "normal" range.  His statement was that neurofeedback is just a tool that is needed to be used with others.  He gave me the example of someone who weight trains very strenuously but goes home and eats pizza will not achieve the desired results.  I have to be honest here and say that this doesn't give me a warm fuzzy feeling...all I can do is be vigilant and make sure that TRex's brain is stimulated every day.

Several observations about today:1. TRex was talking about his pets and kept calling Jasper a "red devil barrow" and laughing.  I asked him to repeat it several times and he kept using the same term.  I always call Jasper the Red Devil but I didn't understand what "barrow" meant.  I then asked him if LoLo was a red devil barrow and he laughed and said funny momma, she is a brown barrow...hmmmm that got me thinking so I asked him if Scooter was a red devil barrow and he said no momma he is a gato.....then it clicked I asked him if Rowdy is a gato too and he said yes.  So it seems that little Mr. Man has had some spanish lessons and he is correct both Japser and LoLo are perros....hahahaha!

After TRex finished his bath he was standing in front of the mirror and laughing.  He asked me "Am I a girl?"  I said of course not silly.  The he said look I have hair like Ms. Kittridge...and I almost laughed because he had made the sides of his hair spiky...like Ms. Kittridge.  Then I said are you sure it isn't like Ms. Owens?  Then he slicked his hair down and said this is like Ms. Owens.  So I would say his verbal processing is progressing.