Note: Let's Talk: Special Needs will be posted in parts. If you have not done so already, you may like to read the previous part... part one, part two-a, part two-b, part two-c, part two-d, part three, networking and support
![IsaiahEyes[5]](http://lh3.ggpht.com/_2hN6VwzPAUg/TG2ozr_jYpI/AAAAAAAADdY/PZt9gq4wJkY/IsaiahEyes%5B5%5D_thumb%5B5%5D.jpg?imgmax=800 "IsaiahEyes[5]")
There are a couple of things that I want to share, but before I can share these things, I must give you an update on the past year.
This update is rather long, and I probably should have kept up with it throughout the year.
The truth is, the year was a bit rough, I was exhausted, I did not really want to deal with it all, let alone write. I did not want to share...not on my blog.
This past year has been a year that I did not expect. Last fall, when IJ entered his new school as a kindergartner I expected that things would be different. How could it not? He was enrolled in a school specific for Special Ed children, a program that should suit his needs. He was enrolled in SEDOL, the LOP program. I expected that his new team would be on top of IJ’s issues, and needs. I was wrong, and I was sorely disappointed. Now, the disappointment did not happen over night, instead, it occurred over a period of time, accumulated, and the year ended with a sigh of disappointment in the system.
The Augmentative Communication system did not truly happen. Due to scheduling conflicts, IJ’s AAC evaluation did not occur until early November 2009. The team did make a determination of a device they felt was best suited for IJ. The problem, said device would not be available until early 2010. The device did become available at end of January 2010, and by March 2010...was discontinued. The team determined that IJ was not taking ownership of the device. They decided to go to a communication book. This determination was announced to us at a March 2010 meeting, and before we could even hear their thoughts they had already taken the device away. I feel that was a very poor move on the school’s part because yet again we were left out of the discussion; we were left out of the plans. So again, another year has gone by, and yet IJ is still without a true system. Now, many months later, I wonder if IJ will ever take to a communication system. He has enough vocabulary, enough gestures, and enough context to make his needs/wants/desires known. The fact remains though, he cannot go into any depth with his conversations. There is a date set up in early September for a ACC re-evaluation, and he is being placed in a different program, a program that is speech and language immersed...so we shall see.
IJ has some behavioral issues that includes: biting, hitting, spitting, pushing, throwing, avoiding, running away, wandering away from adult, being resistant to a different activity, etc. Nothing new to us. Matter of fact, I have told the school for years about these issues to no avail; they did not take us seriously. It is of no surprise to us when this past year the new school started stating they were having some behavior issues. He went from a 2+ hour program to a full day program, and we were fairly certain that his behaviors would come out to play. I actually put this issue on a bullet point letter that I gave to IJ’s new teacher at the beginning of the year; to make her aware. How did his behaviors interfere with his schooling...with his life? Therapies were hard; he was resistant. His ability to focus and attend was very limited. They wanted to take his individual therapy minutes and put him in group therapy. I said, no. I was not willing to let go of his individual speech therapy minutes. All the research says that he needs intensive individual speech therapy not group therapy. We need to find another way. By end-March or beginning April, they did put together a reward system. The system is fine, a band-aid....for now.
For us at home, IJ’s behaviors started escalating tremendously in November, by January or February...we were at our wits ends. We do not know how to handle him. How can we approach IJ, give him skills that he needs, give him boundaries while the current ones mean almost nothing to him. We wanted and needed help. Yes, that is not new either, but our level of need did increase. We were referred to Counseling Connections, and it was not a good fit. We were matched up with a social worker...not sure how that happened, but thought...okay...maybe. Well, as it turned out, she was not what we needed...not what IJ needed. She wanted to hold “talk” sessions...no, we don’t need to talk....we need action...we need a plan. Yes, life is chaotic...our family needs help. BUT if we are able to get some sort of handle on IJ’s behaviors then everything else will fall into place. Truly, and seriously, I believe that. Yes, the girls have had to deal with IJ, and I am sure they are non too thrilled with being a bit displaced by the fact that our immediate attention must be given to IJ....his issues. Still though, the girls will be fine...they are fine. By end of February, I am completely, and utterly discouraged by the fact that we do not seem to be able to obtain appropriate help for IJ’s needs.
February 2010: Since we are desperate, we jump at the opportunity to attend a *free* workshop...a workshop that is geared towards helping parents with children that have behavioral issues. Sure, the workshop is titled Managing Challenging Behaviors in Children on the Autism Spectrum, and IJ is not on the spectrum, but everything that has seemed IJ and interventions that seem to be what IJ needs all are found in the area of the autism world. The workshop was great, and there were several points that I thought were so dead-on IJ. From this workshop I have come to realize and believe that IJ has “thinking errors”...he has deficits in his executive functioning. For me, this is huge. This realization means that IJ should be approached differently....he needs a different type of help system. One of the things this workshop also pointed out was that children who have “thinking errors” need to have a specific system put into place that not only teaches them consequences but really focuses on ways to teach them replacement behaviors...the skill that they are lacking. Wow! This is something that I mentioned to IJ’s school back in Spring 2008 after reading The Child with Special Needs by Stanley Greenspan. Well, the school did not take that seriously either.
April 2010: I know we need behavioral help, and I believe now that the only help we will get is with medication. At this time, we have already decided that we must make another appointment with IJ’s psychiatrist...he needs meds. At this point, I believe that even if we were to obtain a good treatment plan for IJ that medications must be used in order for a behavioral modification program to work. During this month, we have a neuropsychological re-evaluation done with IJ. His neuropsych immediately recommended medication, and encouraged us to get the ball rolling even before all the testing has been completed, and we did.
A few of the recommendations made by the neuropsych: There are 12 recommendations, but I want to highlight these four.
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multimodal approach involving medication management and behavioral treatment interventions is most effective in treating core attentional deficits.
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needs an empirically validated intensive behavioral modification program{e.g.,applied behavior analysis) to increase compliance and reduce negative behaviors in both school and home environments. Without such intervention, his behavior will continue to interfere with his functioning and ability to learn overall.
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deficit in his communicative abilities, it is imperative that he continue to receive intensive speech and language therapy and augmentative communication assistance. However, the intensity, frequency, and format of his current treatment regimen need to be modified. Although he is making some progress based on qualitative observations, he does not appear to be making appreciable gains as per his performances in school and on more objective measures. The development of his language skills will be particularly crucial to his academic progress and learning overall and places him at high risk for a severe learning disability. Thus, daily speech and language therapy in the school is recommended in a 1: 1 setting with a speech and language pathologist. Group speech and language therapy should also be implemented to help improve his social and functional communication abilities.
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Given Isaiah's lack of appreciation of the consequences of many of his behaviors and his lack of appreciation for potential dangers. he requires close adult supervision and monitoring.
The big part of this evaluation was a new diagnosis for IJ. This diagnosis is one that I have only been able to share with a few people, and not until this point in time have I even been able to consider mentioning it here, in writing, on this blog. Why has it taken me since May 7th to be able to share this diagnosis beyond our small scope...IJ’s grandma, grandpa, Aunt Darcy, Uncle Alan, Uncle Darin, Uncle Doane, Ben, Evie, Elizabeth, Elliana, Jody, and school. The answer... while I intellectually know that the diagnosis of PDD-NOS is accurate, and one that has been hinted at for several years. While I know that most of what I read that seems to be appropriate approaches for IJ are all based on autism treatments. While I know all of this...my emotional side kicked in...unexpectedly...and I had a hard time truly believing it. The bottom line is...I think of IJ as a normal kid...for the most part. A child with PDD-NOS is not “normal”...is not a typical kid. But my mind looks at IJ as normal....normal with a few needs. Now, at this time, I am fine with PDD-NOS, I believe. Why am I fine? Well, I cannot clearly define that as of yet, it is just a feeling that this diagnosis is the best diagnosis to accurately describe IJ. Even now, (august 2010) when I start to think the dx is not the most accurate, IJ will do something, or someone will mention a PDD spectrum (also referred to as Autism Spectrum Disorder) symptom in regards to their child and I will go, “Whoa. That is what IJ does.” or “Geesh, IJ, you are showing me a sign.” For IJ his biggest PPD-NOS areas are that he is socially inappropriate. While he is a very social boy, he is not appropriate, many times. His play and social skills with typically developing peers has not developed, or I should say, is just starting to emerge. He does not have what I call the anticipatory factor. Therefore, he does not anticipate things such as his birthday as another child would. IJ’s communication skills are off, that is given since he has Apraxia but the language development of trying to pretend play is just starting to emerge, but still remains limited. IJ tends to focus in on certain things with intensity. If you were to try and move him on when he focused a resistance would be met. He does not transition from a focus of interest well. There are several other things, but those are the ones that immediately pop into mind. Pervasive Development Disorders is a great link to sort through the criteria for diagnoses, and it put into layman terms. When I read through the link I have just provided, it was clear to me that IJ met PDD-NOS criteria.
May 2010: IEP time...
What was not good about this meeting? They wanted to cut IJ’s 480 direct minutes/ month of speech therapy in half...240 direct minutes/ month. Ummm...yeah...not good...not appropriate. I told them this, and stated that if he has not made appreciable speech gains (which he has not) then they cannot appropriately cut his minutes. They argued just a bit, and then increased the minutes to 360 direct minutes/ month. I was told that the other 120 indirect minutes would be used for the therapist to train the staff on how to work with IJ’s speech during classroom time. Still not good, in my book. During this meeting, they accepted the Neuropsych eval, and accepted the PDD-NOS diagnosis. They placed IJ in the SEDOL LASSO program. I was able to visit the program two days after our IEP meeting. It is a Language Acquisition Social Skills program or otherwise known as LASSO. I think the speech/language immersion is a huge plus for IJ. I think the class’s use of pictures prompts is a huge plus for IJ. Still though, his 360 direct speech minutes is not appropriate...he needs more. I wrote a letter. End result... IJ will have a speech/language paraprofessional for 2 1/2 hours per day, 4 days a week. That is a huge step for the school on several levels. But still, there are a few concerning things. Even so, the school has made a huge improvement...I hope.
During the IEP meeting, the team presented a Behavioral Intervention Plan. Ummm....wait! What? I had no idea that a BIP was going to be put into place. We asked to see his Functional Behavioral Assessment. One was not done...did not think so. I strongly requested and pointed out that IJ needs a FBA. His behaviors are not an isolated thing for him...it is immersed within his life....they are part of his disability. The school agreed to the FBA, and one will be done at the very beginning of the 2010-2011 school year. I am hoping that the results of the FBA will give us a good plan...one that teaches replacement behavior...one that does not say his behaviors are because he wants to control his environment, that he is being obstinate. Also, once an FBA is done than I do believe that IJ’s need for ABA will be very clearly shown to the school...I hope.
Why move IJ into the LASSO program? Last year’s Learning Opportunities Program program was not a good fit...too academic....not enough specific help. The kicker is....not until during IEP meeting was I ever told that IJ has “struggled all year”. A little late to be mentioning that, don’t you think? I do. What I have learned from that comment is that I will not wait for the year to end to request a change in his plan, in his program if we do not start seeing appreciable progress. The problem is...what should the time frame be in order to see progress? I am thinking, by the end of fall there should be some sort of progress. I am not 100% certain...will need to search that answer out.
Medication: By mid-May, we did start IJ on Risperdal 0.25 mg daily, and within two weeks the frequency was changed to two times a day. We have seen good results. IJ’s behaviors are still there, but the intensity, and frequency has decreased. He is easier to redirect. However, during his private therapy sessions, his behaviors were still problematic. He is now on a therapy break until his behaviors can be better understood,and controlled. It was, I will admit, very difficult for me to hear his therapists say that a break is needed because of his behaviors. While I was thinking the same thing, the “mom” in me heard....”your kid is out of control. we cannot deal with him. we are dumping him.” In one way, I think that is what they were saying, in another way, I think they were not.
At this time, August 19th, IJ’s medication dosage has been increased to 2 - 0.25mg tabs in the morning, and 1 1/2 - 0.25 mg tabs in the afternoon. Why the increase? It seemed that the aggressive behavior was starting shows itself a bit more. The increase dosage seems to be helping, but I think the medication combined with behavioral treatment will be better. If another increase in dosage is required, I will not do so until IJ has been in school for a solid month, or a bit more.
For the summer, , IJ finished his 5-week summer school session, and it went well. His therapy time went well. This summer school was less structured...I wonder if that fact is key for IJ. Actually, upon further reflection, I do think an environment that teaches more through play rather than timed table top activities would be better for IJ, at this time. I have found a great site that talks a bit towards what I am thinking would suit IJ. I will go into this further in another post that I will write up relatively soon.
IJ loves to swim, and this activity has been great for him. He is chilling away with us...great down time with a caveat, he must be doing something. In other words, we hang out in the house very little. He rides his bike, and swims a lot. He is active...he is doing...we are doing.
This coming Tuesday, schools starts for IJ. I hope it will go well. He does not seem too enthused. Each time we tell him that school will be starting again for him soon. His reply is, “Nope.” When I ask, or another person asks if he is wanting to go back to school. He says, “Nope.” Don’t you want to play with other kids? “Nope.” Ride the bus? “Nope.” School will be fun. “Nope.” Don’t you like school? “Nope.” All questions in regards to going back to school is met with a negative response from IJ. Hmmm...makes me wonder if he will resist getting ready for school. I think he will not, but I am not certain.
In some ways, I feel like we are on stand-by. You know, waiting for the next step to start, hoping that the step will be a good one. Knowing that we will probably need to tweak things, hoping that the school will understand the tweaking needs. Stand-by....
![IsaiahEyes[5]](http://lh6.ggpht.com/_2hN6VwzPAUg/TG2ozXCnjwI/AAAAAAAADdU/J24eeZKTElQ/s1600-h/IsaiahEyes%5B5%5D%5B7%5D.jpg "IsaiahEyes[5]")
