31 For 21: Day 5...More Acknowledgements

I began this month committed to posting every day.  I have come to realize that it is harder than I thought it would be.  I do not claim to be a writer and every evening after I publish my post for the day, I wonder what I will come up with to write about the next evening.  I quickly looked back at my post thus far and realized that I have been acknowledging the professionals that I have met on this journey that have been a tremendous support to me since Andrew was born.  Since I first began my blog when Andrew was almost 3 years old, I never had the opportunity to discuss the professionals that have been a part of Andrew's life in the Birth to Three program.  Tonight, I will begin with the second therapist that Andrew met through this program.

When Andrew was born, we lived in a small condo in Branford that Chris purchased before we met...long before he knew he wanted a family someday.  Soon after Andrew was born, we took up the opportunity to move to Madison to live with my mother in the home I grew up in.  My brother and his family had been living with her for 2 years and my sister-in-law longed to move back to Washington state, where she lived up until they moved across the country to live with my mother.  Chris and I thought it would be a great opportunity for us to save some money by renting out our condo and, since I worked with my mother, have more convenience of living where I worked.  Looking into the future, we realized that the Madison school system could provide more opportunities and programs to benefit Andrew when he transitioned to school.  We took the summer to remodel the second floor of my mother's house which consisted of 3 bedrooms and our own full bathroom.  The third bedroom was transformed into our playroom and Andrew's therapy room, which is where we met with Patricia Plunkett, Andrew's new Physical Therapist. 

I immediately felt comfortable having Pat work with Andrew, however,  he unfortunately did not feel the same.  Always a cautious child, a new person trying to coax him into performing gross motor tasks, led to many tears on Andrew's part.  Pat persisted in her efforts to get Andrew comfortable with moving through space, one of his greatest fears, even to this day.  A classic observer, Andrew was most comfortable sitting on the floor playing with the toys within his reach.  He would ignore any attempt by us to get him to move to reach a toy placed beyond his arm's length.  The first months of Pat's weekly visits caused tears, tears and more tears from Andrew until the day that he finally realized that crawling wasn't so scary and it would get him to the new toy that he was so interested in checking out.

After Andrew started crawling, Pat became his new best friend and the tears were replaced by giggles as they played on the floor...until it was time to learn to walk.  Again the tears and the determination that followed as a result of each of them determined to get their way.  While Pat was confident that Andrew had the ability to walk, Andrew proved that he did not have the confidence to believe her.  Months passed by, Andrew's second birthday came and went with no first steps.  On a cold morning in February 2009, Pat arrived to perform Andrew's annual evaluation, the last formal evaluation that would eventually be given to the school system when it was time to meet with them regarding Andrew's transition into public school when he turned three in December.  We began with the evaluation after a few questions that I had to answer.  Andrew performed as I expected; he really was a bright little boy who understood far more than he could communicate to us.  One of the final questions that Pat asked me was "Can Andrew walk 6 steps unassisted?"  I looked at her and laughed.  She knew as well as I did that Andrew was not walking yet.  Yet she still made him stand in front of her while she held his hands.  As she let go and took a step back, Andrew began to follow her.  She kept moving backwards and he continued to follow!  Andrew was walking!  He managed 10 steps that morning until he fell to the floor on his bottom.  I quickly scooped him up and danced around with him, singing some impromptu silly song about walking.  His giggles sounded like a sweet melody in my ear, one that I had been waiting 26 months to hear.  I put him back down on his feet and let go of him.  He leapt towards me as I stepped back and he continued to follow me around the room, taking more and more steps before he fell.  We did this for a few minutes, just long enough for him to finally drop to the ground tired from his workout and for me to realize that his first steps weren't a fluke.  When Chris arrived home from work that night, Andrew proudly showed off his new accomplishments to his daddy and then smiled at the sight of the cake I ran out to buy for him in celebration.

Thinking back on that day, I remembered the expressions on all of our faces; they all showed the pride we felt in Andrew's accomplishment.  For it was not only his accomplishment, but it was ours as well.  The months and months of time and effort that the three of us put into the goal, "Andrew's First Steps", were celebrated that day.  It was also the first day that I realized that it will take a village to raise a child and the village that I have now it a pretty good one to have.  The support system that I have built around us includes not only family, friends and therapists, but also perfect strangers who through the power of online social networking share in our accomplishments, our failures, and our struggles and who offer continual support and encouragement as we take Andrew through his journey of life.  Indeed, it does take a village, even if that village stretches across the globe.

Even though Andrew has left the Birth to Three program and has new therapists that have joined us in our journey, it is the people like Pat who came to us as our journey was just beginning and shared in the success of Andrew's first milestones that we will never forget.  Thanks Pat!  We miss you everyday!

31 for 21: Day 4...PPT Meeting



Andrew says "Yay, Momma! Yay!"

 For some reason, I struggled to motivate myself to write this blog post.  It has been a long day, the beginning of another long week.  I thought that the weeks would get easier and less busy once we settled into Andrew's school routine and we would adjust to him being in school every morning this year.  After he began school last December when turned 3 years old, I decided that my goal was for him to attend not only the special education preschool program run by our public school system, but for him to also attend a private preschool program in our community.  I want him to have as much interaction with his typical peers as possible to get him accustomed to interacting socially.  He is shy by nature and it takes him a long time to warm up to people.  This year, Andrew is attending school 5 mornings a week, three days in the special education preschool at Burr Elementary School and 2 mornings per week at Killingworth Nursery School.

At our last PPT meeting in June, I expected to receive the PT evaluation results from the district physical therapist.  However, the PT did not attend the meeting and when I finally received his report almost 6 weeks later after many requests to his teacher and the school's principal, I was very disappointed with the report and immediately requested a PPT meeting for the first week of school.  The initial report painted a VERY different picture of Andrew's abilities than I see on a day-to-day basis.  While I know that many children perform differently in school than at home, I felt the difference between my observations and those of the PT were miles apart.  After a flooding at the school that prompted our initial meeting on the first day of school to be rescheduled, Andrew's team finally convened to discuss the evaluation with the PT present.  Also attending the meeting, per her request, was the Director of Pupil Services (Special Education) for the school district.  I discussed my concerns with the report and the lack of information contain in it.  I was prepared to request for an independent evaluation at that point, but the team, specifically the director requested that I allow the PT the opportunity to re-evaluate Andrew.  Andrew's speech therapist offered to attend the evaluation as a person who is familiar with Andrew, which would help with his confidence and hesitance with unfamiliar people.  The OT was also going to conduct her evaluation during the same time period so we could discuss both evaluations at our next meeting.  The director was very straight-forward during the meeting.  It was she who recommended a timeline for the evaluations to take place and expedited a time frame for the next meeting, which she would also attend to monitor the situation.

This next meeting took place this morning.  Given our track record with Andrew's PPT meetings, I fully expected to wake up to a school delay, which would have forced the meeting to be rescheduled again.  Hurrying Andrew into school, I rushed across the parking lot to the front entrance of the school, and then remembering that I forgot to bake the scones that I am known for carrying into the office for our meetings.  I knew now why I had an extra half hour this morning...I was supposed to bake those scones.  Oops!  Upon signing into the office, I was immediately blamed for the copiers in the school breaking down.  Seems like something happens every time we have a meeting scheduled.  Did I mention that the fire alarm went off for no reason during the meeting four weeks earlier?

The tone of this meeting was immediately different.  As I reached out to accept my copy of the PT re-evaluation, I felt the weight of the report in my hand was much heavier than the last copy I reviewed.  I scanned through the report quickly and then settled in to listen to the PT summarize his findings.  I was surprisingly impressed with his presentation.  This report was immeasurably different than his initial report.  The written report was organized and filled with detailed observations and included not only his assessment of Andrew's gross motor skills, but a draft of the goals that will be added to Andrew's IEP and a copy of the letter that he sent to Andrew's pediatrician with a summary of his observations and his requests for more information to help him understand any diagnostic issues that Andrew may have that could affect his gross motor development.

I was quite amazed by the differences in the evaluations that were presented within months of each other.  I was impressed by the thought and time that went into the re-evaluation.  I know that the director would have expected nothing less from the PT.  I know that the school would do whatever they could to avoid paying for an independent evaluation, but I did not expect to see the quality and attention to detail that was presented to me today.  The re-evaluation exceeded my expectations and the services that the PT recommended were exactly what I would have requested at this meeting if they had not been offered.

The lesson learned:  You know your child best.  You know what your child needs to succeed.  Your job as a parent is to advocate for your child to make sure that the school is doing their job to help you accomplish the goals that you have for your child.  If you believe that the school is not providing or offering the services that you believe your child needs, it is your right to question the reports and ask for additional information.  You have the right to request a new evaluation or an independent opinion.  And most importantly, if you are meeting to discuss a certain evaluation or to request a new evaluation, make sure that the service provider that is expected to present the evaluation report or perform the requested evaluation, make sure that provider attends the meeting.  It can save a lot of time and frustration in the end.  I wish that I had learned this last lesson earlier...I spent much time beating myself up over wasting the summer months holding onto an evaluation that was completely inaccurate.  My only consolation is that I learned this lesson early enough to make a difference to the rest of Andrew's school career.