"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Thursday, May 10, 2012

IEP = Big Plans for Brycen

We gathered with Brycen's educational team a few weeks ago for his annual IEP and walked away with a brand new plan for our little buddy.  I didn't update immediately because we still had a few things to work out in the plan before it was finalized and wanted to be able to post about all of it at one time.  These are the main points that will interest most of those familiar with Brycen and his services.



1.  Brycen is progressing far faster than we could ever imagine.  This meeting reiterated how he is thriving being in the general ed classroom for part of the day with a 1:1 associate.  One line that stands out from his written IEP is "Brycen is learning some of the general education content at an age-expected pace.  Once he learns something, he is holding onto it."  So this is great news, right?!  Of course.  The next line is "His inability to attend to task and follow teacher direction will impact his ability to show what he knows.  An adult to help with keeping him on-task, restating directions, and to interpret his communication attempts will be necessary for Bryen to experience success in general education content."  So it's not what he is learning in gen ed that is a problem for him, but how he is learning it and how much help he needs to pay attention to learn it. 

2.  His communication continues to be a big area of concern.  We all know communication is a huge factor with all children on the spectrum...whether than can verbalize or not.  In Brycen's case, he is unable to verbalize but we know it's in there...just need to give him the tools like his "talker" and the I-Pad at school so he can communicate with us more and show what he knows.  Brycen will continue to receive speech therapy at school 40 minutes per week in addition to his time with the special education teacher and associates (who of course are constantly reiterating communication with him).

3.  He has come a LONG way with his writing skills.  While he needs complete assistance to come up with topics to "journal" about and typically needs prompts to answer questions using his "talker," he has the ability to write out every letter of the alphabet capital and lower case...with some modeling need for a few of the letters to get them correct.  He is struggling with writing within certain lines, spaces, etc...so he will continue with Occupational Therapy at school 120 minutes per month to finetune these skills using some special paper and tools. 

4.  Since his progression in the educational aspect is holding steady and showing no signs of regression over breaks, he does not qualify for the typical extended school year program.  BUT, the entire team agrees that he is most definitely at risk for regressing in the areas of routine and socialization with peers.  The team has worked out a plan to have him participate with a 1:1 associate this summer for 7 weeks, up to 6 hours per week, at the local YMCA program where he can regularly practice his socializing and have a routine that is similar to that of the school environment.  We are very lucky in that one of his regular associates is willing and able to do this so we know he will be in good hands and he will understand the transition better with her help.

5.  Brycen will participate in all grade-school testing like the other 1st graders (oh my goodness, my son is going to be in 1ST GRADE!!) with some exceptions to having no time limit and having an adult be able to assist him with filling in the answers after he comes up with them, etc.  Of course there are some things they are unable to do due to educational laws like read certain questions to him in the reading area of testing, but they will accomodate him as much as possible to align with his special needs.

6.  Lastly, this is what we might consider the biggest change of all for him.  It was agreed by the team that he is doing so well during a few areas of the day with participating and following directions that there will be times throughout the day where he will NOT need a 1:1 associate assigned to him.  These times will include PE, music class, and recess time...as well as some time here and there in the general ed classroom that doesn't involve specific learning times.  The day after the IEP in April, the team immediately implemented this part of the plan with phasing out the associate during these times.  Doing this the last few weeks of school will give the team time to determine if it will work out ok and spot any kinks in the plan.  To us, this is a huge step towards his independence!!  It shows just how much he has progressed in a setting with his peers and it also shows just how hard the associates/teachers have worked to get him to this point in these areas after just 9 months of school.  So far it seems to be going well...as these are 3 of the school setting he very much enjoys! 

So as you can see, there have been some major changes in his plan that mostly stem from how much progress he has shown over the last 9 months.  He enjoys school, enjoys his peers in kindergarten, as well as enjoys his friends in his special education room as well.  It seems like all of his teachers and associates also enjoy working with him.  Though we know he can be naughty just like any other 5/6 year old boy, he has so much determination to learn and have fun!  We are so proud of his achievements this year and are in awe of just how far he has come in the last 3 years since his initial diagnosis.  Thank you to all of those team members who have had a part in his life and pushed him to be the best he can be!  He doesn't like to be pushed outside of his comfort zone at first, but as we can see it is paying off in so many ways.



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Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.