Tag Archives: PT

Climbing Indoors, Candy corn, and Claire

When I say climbing, I don’t mean the kind you do with a dynamic kernmantle rope (ahem, Brian has a lot of gear in the garage).   I mean the kind you do on a regular basis up the stairs and in the case of my children, on their new indoor playground.  Case  and Claire are blessed with enormously generous grandparents who shower them with toys and clothes constantly (to say they really do not want for anything would be a gross understatement)[we are so lucky -believe me I know!].  One set of grandparents the kids happen to live with and so the outpouring of love (or some might even venture to say ‘spoiling’) is done on a daily basis.  The latest toy/awesome gross motor tool that now graces my in-law’s back porch (turned playroom/workout room) is a giant, outdoor jungle gym.  They found it on craigslist and actually happened to know the sellers from the YMCA (obviously) and bought it.  The thing needed a major cleaning so Lee and I spent half a day taking it apart and giving it a thorough scrubbing  (I mean, like lots of elbow grease and spiders).  We then spent another half a day figuring out how to put the damn thing back together (exaggerating (a little)).   Side note: I wish we had video of the two of us using a rubber mallet trying to slam this massive playset together – cue expletives.

We finally did get it together again and the kids are all over it. And, although it’s frowned upon at school (for safety reasons), we encourage Case and Claire to go up the slide.  Like walking up a steep hill, it strengthens the muscles in your quadriceps (which are very weak on Case) and because the incline on this slide is really steep, he needs to pull with his arms to get all the way up.  It has a tunnel which we have to bribe Case to go through as his weak hip flexors make it difficult for him to pull his legs up into it and then putting all the weight on his arms to get out is equally challenging.

Perhaps you’ve already guessed what we’re using as a bribery tool… I can’t help but buy a bag when its staring right at me at the checkout line in Target and the kids can’t help but want it (Brian too).   Terrible thing, this holiday we call Halloween!  But using  small pieces of candy is incredibly motivating for Case and so I vow to myself to brush his teeth a little longer each night if he makes it through the tunnel two more times or up the stairs without as much fuss. Side note: We also use candy corn as a reward for going on the potty (I refer to it as peepee candy – appealing, eh?).  We put it in the zipper closure ziplocs and make Case open and pull “one” out or we also have an old bouillon cube container with a screw on lid that we make Case hold and unscrew (this is still pretty challenging).

You may notice in the photos that Case has things around his ankles. Although it could be some sort of odd fashion statement (not sure what the statement would be), they’re actually just 1lb weights which we’ve been putting on him when he’s around the house to help strengthen his legs while he does every day activities.  He’s getting around much better in them and I’m thinking of upping the weight to 1.5/2 lbs. Case minds them a little but doesn’t have the fine motor aptitude yet to undo the rather strong velcro  and pull them off his heels so he’ll endure it until he masters that skill (and I’ll be proud when he does!).

Finally, I had to share a few recent photos of Claire in honor of her first birthday.

The photo where she’s holding the landline phone perfectly captures the ever-present ‘tude that this girl has ALREADY.  We are in for it, I’m afraid!  The other photos are of her newest trick which is to play peekaboo with her hands over her eyes.  She showed off all her new tricks at the doctor’s office (labeling body parts to the head, shoulders knees and toes song and repeating almost all the words Case knows!) on Wednesday for her well-baby to which her smitten doctor echoed me in saying, “Uh oh, Brian is in for it with this one!”.  She is certainly a spitfire, but every time I begin to think how can I parent two totally different children I remind myself that she is the perfect prescription for Case.  He’s got a little sister who won’t take no for answer and who is going to stick up for her brother tooth and nail.  Not to mention that Case now goes up the slide willingly because Claire does it first.  In our house, a little competition is definitely a good thing!

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As many of you already know, I am not very shy when it comes to talking about anything involving bowels and their movements; my own and those belonging to my family/close friends (even sometimes acquaintances). And, because I laughed out loud (by myself) after today’s experience, I figured for those of you equally comfortable talking about poop (and dealing with it too – which is most moms, I’d venture to guess) well, you might find it funny too. Disclaimer: I am about to regale you all with story about poop – if that’s not something you can stomach (or frankly don’t want to!), stop reading as I do get a little graphic with my descriptions.

This tale is not about my own poop. Rather, it’s about the poop of my two sick bambinos. Last night was a bit of horror in that no one really got any quality sleep due to congestion, coughing (both Case and Claire) and diarrhea (on Claire’s part), so, like a good YMCA childcare user, I sacrificed my workout this morning for the better of everyone’s children and kept the kiddos at home. However, by 9:30 am, we were antsy, so I decided to take another trip to Blue Bird Gap Farm with the kids (we had just been there last night!). This is my new favorite spot to venture to, by the way, as its small enough to see a lot without having to trek too far to each section, but big enough to make if feel like its a special trip (oh and it’s FREE).

We were having a grand-old-time gawking at the noisy ducks and turkeys, feeding the goats and two lively alpacas (which Case kept referring to as ‘Elmos’ – not sure why!?) and reaching our hands over the fence (and then being hoisted by moi) to pet the horses and cows, when I realized that we were approaching the witching moment – the moment where the pleasant, idyllic morning turns into frenzied-must-get-home-to-feed-them-lunch-before-they-turn-into-crazy-people (also the exact moment that I curse myself for not restocking my diaper bag chock full of snacks to postpone inevitable ‘hanger’ (hunger and anger together – something we experience a lot in our house). But we hadn’t yet made it to the perfectly Case and Claire-sized-playground where I had planned to work play with Case on some stairs and try and squeeze in the morning PT (and let Claire do her thing). So I quickly herded the cats kids over to the playground and excitedly spoke of what fun it would be to climb up those stairs and slide down that slide (four or five times in row).

The two began climbing and Claire made it to the top first where I hurriedly ran over to make sure she was, in fact, going to go down the slide in a manner which didn’t involve her landing on her head (and good thing because she was preparing slidetakeoff in what I like to refer to (for Case) as “Superman style” (head first on belly)). [Side note: Sometimes we force him to go down that way so that when he gets to the bottom he has to use his arms and core to get himself off (arms are very weak and core the same).] I quickly repositioned her to go feet first on belly (I don’t have a fun name for that mode of slidetransport) and in the time it took me to do that, Case still hadn’t yet made it to the top. When I went back to coax him up the rest of the way I smelled why. Now, as another sidenote, we are doing VERY well potty-training (if I keep on top of it, which I’ve gotten accustomed to doing) and Case rarely poops anywhere but the toilet. Not today, people, not today. And this was not just any old poop. It was sick poop. The worst kind of smell, so terrible it makes me a little gaggy just thinking about it (and that’s saying nothing of it’s runny (yet sticky?) consistency). Ok, I’m getting a little graphic even for me. Anyway, it was bad. Luckily, I had had the presence of mind to bring the stroller with me, therefore I strapped Claire in and marched (well, he waddled) to the… we’ll call them facilities. Now mind you, this farm has no admission (it’s free, remember!) – it’s part of the Hampton Parks and Recreation commission, so while it is a really great local outing destination it does lack in the arena of amenities/facilities. The bathroom was not only very small, it was very hot and without any air conditioning. So, picture this: we’re now hangry, poop-covered (well, Case anyway), and hot. And, as I’m beginning to pull down his pants I realize that we are being swarmed by flies and I think, duh, we’re on a farm, of course there are flies swarming – I might as well be cleaning up manure in here. Anywho, I get Case out of his poop-covered shorts and undies and into an alternate pair (I always have one extra change for each of them – one extra change, that’s it. Keep that mind.) and then I promptly toss his soiled stuff in the ziploc that his change of clothes was in (handy dandy). I realize half-way through clean up that Claire is crying (not only because she’s hot and hangry) but because she too is being swarmed by flies because she too has done the deed in her own pants, well diaper. Thankfully, it was in a diaper.

So I get Case finished, plop him in the stroller (he considers this a treat) and then move on to what seemed like a whiz – a regular old diaper change – sans diarrhea, just a little turd (or I believe as I referred to it while chatting with them – a turdlet, “Ooo, thank goodness, Claire’s only got a turdlet!” (or something like that)).

Finally we finish and I wash everyone’s hands (again taking turns strapping them in the stroller to do so) in order to get off both poop and any extra animal saliva I inevitably missed after we’d fed our friends. The kids are relieved to be out of the bathroom and excited to head back to the playground, I decide (stupidly) that we’ll do one more trip up the stairs and down the slide and then we’ll skid addle. This time, Claire heads to slide (she often prefers – like many climbers do – to go up the slide and down the stairs) and Case heads to the stairs. I’m watching both and am relieved when I see both reach the top at the same time. Now to get Case down the slide and Claire perhaps to follow and we’ll leave. Nope. I smell it again. I check my hands thinking, how could I have possibly missed poop on my hands (I washed them three times!) and then I glance at poor Case. His eyes say, “Really sorry, Mom,” but his body is headed for the seated position to get down that slide (once and for all!). I grab him before he has the opportunity to sit in his mess and think to myself – I really should always bring two changes of clothes. I strap Claire back in the stroller while I try to make sure Case doesn’t sit in his mess and this time, I head straight for the car. Lucky for Case my new yoga mat was in the trunk so I pop open the trunk and lay it out. Claire is now crying in a fit of hanger so I attempt to divert her attention with her water bottle while I hoist Case into the trunk and as I’m doing that I realize this poop (poop number 2) has not been contained by his undies and shorts. Oh no. It is now down his legs and pooling in his little Keens. I gag. I’m usually pretty good, but this was just nasty. The poop smell coupled with Claire’s now screaming just about sent me over the edge until I realized this will be funny when I share it with others and you will laugh after its all over so suck-it-up-sista. Which I did.

Lucky for me, I had an old pull-up in the diaper bag so Case got to go home pantsless (and shoesless for that matter) but not before he stuck his hand onto his poop-ridden leg and wiped it on my new mat (my brand new mat!). Luckily the movement of the car lulled the two into a state of diarhea induced exhaustion (but not sleep, so naps were not compromised!) that is until I smelled the smell again as I was pulling into the driveway and realized Case had gone once more. The diaper did a much better job of containing than his other bottoms but not quite good enough so his carseat cover needed to be washed (little did I know I’d just be able pop it into the load I’d be doing later containing his poop-soiled bedsheets after his nap!) Thankfully, Brian was home when we arrived (again poop-covered) and was able to scoop up Case while I quickly got Claire something to eat and after one of the quickest lunches ever eaten, both kids went down for naps. Sweet relief cause I was pooped (pun intended).

In the event of your own pooptastrophe, repeat over and over in your head :

Someone will think this is funny.

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How to Transition (smoothly!)from Early Intervention to Public Special Education Preschool

Case just finished his first week of developmental preschool at a local elementary school where he attends a special education class, 4 mornings a week.  All the kids in the class are 2-3 years old with varying delays and developmental challenges and it’s a class specifically designed to transition Early Intervention kids from home therapy services to a more typical school setting. To say it went well would be an understatement.  Every day I picked him up he was smiling, exhausted and “hundy” (or “hungry”  for those of you who don’t speak fluent  Case).  His teacher and her aides were already saying things like, “Bye sweet boy”, “What a lovey”, “See you tomorrow, handsome man” (all things part of my regular vocabulary in referring to him). He warmed to his teacher almost immediately and so did I.  A week prior to the Open House she called me and we spoke for over an hour on the phone before she invited me to the school (that same day!) where she spent another hour listening to my concerns, hesitations and general thoughts on how best to help educate Case there (as well as giving me a tour of the school and all its resources AND introducing me to everyone we ran into along the way).  The great effort she put forth in trying to ease my fears as well as get to know Case certainly helped bolster my confidence in our decision to move Case from our weekly home therapy sessions and one 2-hour developmental playgroup (with therapists we had come to consider family)  into a more rigid school environment where he would go (without me!) for 3 hours, 4 days a week.  This big life-altering change for Case (and me) has been in the works for the past 6 months and certainly didn’t come into existence easily.

I was trying to think of a simple way of organizing this post and explain how all this worked (not only  so I could better inform my family/friends but also so it could serve as a resource  for anyone whose child is about to transition from Early Intervention and private therapies to a Public Special Education School System) and the only thing I could come up with was just to lay it out how it happened chronologically (as that’s how almost everyone will go through it, step by [baby] step).  Now mind you, the way things are done in our county in Virginia could vary a little from the way they do things in New York City, but from what I’ve read the basic (and fundamental) steps are the same. So here it goes:

Step 1: Just before Case turned two, I told our special educator, Jean,  (who Case saw on a weekly basis) that I would like for him to begin preschool the next fall.  She, in turn, had me sign a release to make a referral to the local school system here.  For the past year Case had stopped all private therapy and was only receiving speech therapy and physical therapy on a bi-weekly basis as well as seeing his special educator for 1 hour on a weekly basis. Jean and I  worked to establish weekly goals (which included working not only on specific communication and physical goals but also assuring that Case was using play to accomplish some of those goals (appropriate play is a big weakness of Case’s so a lot of what Jean did for us was model typical play for him to just practice – things like rolling a ball back and forth and putting a toy car on the ground, pushing it and saying “zoom” (those things just didn’t come naturally to Case)).  Although Case scored very low on his fine motor skills in evaluation, CDR (Child Development Resources – the organization in charge of the Early Intervention Program for our area) didn’t have the resources to allocate another specific occupational therapist to Case so Jean also worked quite a bit with me and Case to come up with ways to better his fine motor skills.  The choice to take Case out of a more medical therapy setting (that he’d been receiving at the Children’s Hospital of the Kings Daughters) for SLP (Speech language pathology), PT (Physical Therapy), and OT (Occupational Therapy) and move him to receive considerably less therapy (from twice a week to twice a month) was a difficult one (and one we did when Claire was born) and I believe it was the right choice for Case.  We have always made Case’s development a priority in the house and knew that what we would lose in the few hours a week that we weren’t actually going to therapy, we would gain in the type of therapy we would be able to offer to him (a more educational and play-based therapy for all of his areas of weakness, (and at the time it was a great relief to not have to leave the house with a newborn in the dead of winter!)).

Step 2:  Make sure ALL your child’s evaluations/assessments are up to date (within 6 months) and included in his/her Early Intervention IFSP (Individual Family Service Plan).   The process of evaluating your child is usually managed by your Early Intervention service coordinator (in this case it was Jean (also his special educator) who wore multiple hats at CDR) and reviewed every 6 months, however, sometimes things slip and so it’s important to have these up to date so that when the time comes to share all your info with the school district, all your ducks are in a row and you have a better understanding of your child’s needs.  In our case, the instruments that CDR  uses to evaluate [E-LAP and REEL-2] are a little bit antiquated  and we felt (Jean and his other therapists included) his scoring was not accurately indicative of his abilities and so to insure the accuracy of his looming educational program we urged and the county decided to do their own evaluations for speech and development [PLS-5 and BDIST], they did not, however, decide to any specialized evaluations for OT or PT (more on that later!).

Step 3: Coordinate with the local school system and your Early Intervention program to set up a Transition planning/Child Study Meeting.  Again, this should usually be handled by your Early Intervention service coordinator, but in our case the local school system representative reached out to me first (unbeknownst to Jean) and scheduled the meeting. From what I’ve heard from other parents, this happens frequently as the public school system sees you and your child  as their client, not CDR/Early Intervention and so rather that going indirectly through your service coordinator they go straight to you, the Mom (the rainmaker!).  That’s all well and good –  however – you do want to ensure that you have your Early Intervention Service Coordinator/Special Educator  in the meeting (to help you advocate) and so making sure the meeting works for all parties is key!

Step 4: The Child Study Meeting – the first meeting with the local school system.  At the meeting make sure to come prepared to talk about your child’s current IFSP and any other additional information you can provide to the local school administrators to help give them a picture of your child’s current developmental abilities.  It is at this meeting that the local school reps (in our meeting there was the principal, a preschool teacher and a speech pathologist)  will decide if they need to reevaluate using their instruments (or if they have all the info they think they need) as well as set up any additional screenings or observations to help determine what educational plan and related services for which your child will be eligible.  At our meeting, because both Jean and I both felt Case was misrepresented (scored higher than he should have) on the evaluations CDR uses, we made sure to speak very candidly about each of Case’s areas of weakness (and strengths) as well as give anecdotal stories to illustrate these.

Step 5: Additional Evaluations, Screenings and an Observation.  In our county in Virginia, the school district has 65 business days to complete additional evaluations and observations before the next step which is the eligibility meeting.  For us this meant Case would need to have both a vision and a hearing screening, an additional developmental evaluation (The Battelle Developmental Inventory 2nd Edition) and speech evaluation (Preschool Language Scale 5th Edition) as well as an observation (in the case it was a home visit from one of the preschool teachers involved in our meetings) to see Case in a natural setting. TIP: For the screenings, make sure to indicate that you’d like for the school district to complete these (if you do it on your own (ie. visiting an optometrist and audiologist) like we did, you will have to pay and these screenings are almost always not covered by insurance as they’re education related and not exactly medically necessary).

For the Observation, ideally the school reps like to see the children in their most natural setting on their own.  However, Case isn’t so great at playing by himself so the observation involved me very much, and how I engaged with him.

For the evaluations, I brought Case to the preschool classroom and the preschool teacher and speech pathologist evaluated him (without me for the majority of it) for two hours at the end of which they gather anecdotal information from me.  TIP:  Much of what was written during the observation of Case  as well as the final part of the formal evaluations came directly out of my mouth, so, as a word of advice – know how to talk about your child, and think about what his/her challenges are in regard to how it will affect his/her learning.  All of what happens now will be the foundation of his/her education going further and it’s important to mention and talk about anything that you may even think is important because it just may well be an indicator of something else or something that any of his/her future educators has dealt with before. Seems like a no-brainer, but I myself have sometimes found that I haven’t quite formulated how to speak about what I’m experiencing with Case and its to his detriment.  I’ve also found that any insights I’ve felt the need to share have been important.

Step 6:  The Eligibility Meeting. This is the second meeting with the team from your local school system and the purpose of this meeting is to determine whether your child is indeed eligible for Special Education services as well as any other related services (ie. SLP, PT, or OT).  Per Virginia regulations, a child is eligible for special education and related services if he/she meets criteria (which varies between each of the local school systems) in any of the following categories of disability:

1. Developmental Delay (the most often used for children ages 2-5)

2.  Autism

3.  Deaf-Blindness

4.  Emotional Disturbance

5.  Hearing Impairment

6.  Learning Disabilities

7.  Mental Retardation

8.  Multiple Disabilities

9.  Orthopedic Impairment

10.  Other Health Impairment

11.  Severe Disabilities

12.  Speech or Language Impairment

13.  Traumatic Brain Injury

14.  Visual Impairment

Results of medical, development, speech and observation data indicated that Case met the criteria as a child with developmental delays that require specialized instruction.  However, during this eligibility meeting there was no discussion that Case would not qualify for SLP, PT and OT (most of which he’d been receiving and all of which seemed necessary to me).  This turned into a point of contention at Case’s IEP (Individual Education Program) meeting (which  is Step 7) which I’ll discuss next.

Step 7: The ever important IEP meeting.  This is the final meeting of the transition process and should involve the same cast of characters. In our case, however, the principal who had been in all the prior meetings was not present  (she had her assistant principal sit in who had not taken the time to read Case’s file ) nor was the speech pathologist who conducted the additional evaluation, she also had another speech pathologist sit in too.  Therefore I have another  word of advice.  TIP: In scheduling the IEP meeting make sure all those who have been in the previous meetings are able to make this (probably the most important) meeting (had I known the principal was going to have a stand-in, I would not have agreed to meet that day – and the same goes for any of the specialists involved).  Anyway, before we began this process, CDR compiled a very well-written information booklet on how best to handle this transition.  The following comes from their Infant Parent Program Transition Handbook:

Before the IEP Meeting think about:

Now – where your child is with his/her developing and learning

By Next Year – what you want your child to learn or be able to do

How – your child learns best (in a small group, with lots of movement/exploration, with gestures and sign, etc.)

Services/Supports – necessary to make that happen

I thought the entire book was really helpful (and has helped me write this blog post), but I thought the above was a particularly helpful way of framing my mindset in going into the meeting.  As this was my very first meeting regarding formal school there were a lot of emotions involved (as well as, quite frankly, a lot of issues to discuss) so this helped me break it down.

Regarding setting goals, Jean gave us two helpful suggestions that I had in my mind while we were discussing Case at the meeting:

1.  Really think about what’s going to be practical at home (as well as school).  So especially with children so young (and lacking in fine motor skills), even just pulling up your own pants is a challenge (it’s also part of one of Case’s self-help goals!).

2.  Set manageable yet high goals.  This is difficult because it’s often hard to picture your child accomplishing something that’s seemed so very daunting up until now (like drinking out of a open cup with minimal spillage!).  But this bit of advice really helped  us set goals that will be challenging yet necessary!

Case’s goals are broken down into manageable pieces by organizing them into areas of need, which are:

1. Self Help

2.  Communication

3.  Fine Motor

4.  Gross Motor

5.  Social Skills

Within those areas of need there is a broad long-term goal  (ie. Case will improve his self-help skills as demonstrated by mastery of the following objectives) followed by a series of measurable objectives (ie. Using adaptive equipment and with initial assistance Case will use a spoon to scoop food and bring it to his mouth with minimal spillage, on 4 out of 5 trials at an 80% level by 5 August 2013).  Coming up with measurable objectives is relatively easy if you know your child’s strengths and weaknesses (and if this is your first and you’re not quite sure what he/she SHOULD be able to do, that’s when it’s particularly helpful to have the insight of the professionals there!).

Some other key items (outside the goals) that are discussed in the IEP meeting are:

1.  Placement – usually referring to the educational classroom or group that is part of your child’s IEP (where he/she will receive services).  Special Education services may not mean a classroom placement (although from what I’ve read regarding this early transition in most cases’s it does, especially with a child who’s categorized with developmental delay and who does not have any behavioral or fragile health issues).  There are different educational settings for preschool children with special needs (although not all of these options are available in each county): a.  Home-based service, b.  Integrated Setting (a preschool class made up of children with and without disabilities), c.  Inclusive Setting ( a community based preschool program for example in our area: Head Start, and Bright Beginnings), d.  Self-Contained Classroom (a preschool class in which all students receive special education services).  Initially in our IEP I had wanted Case to be in an Integrated Setting, however this option was not available and so Case is currently in a Self-Contained Classroom and seems to be doing well (although I do worry about him being the least challenged in regard to some things, I think that as this is his foray into the formal school setting,  having him feel like a leader to start out may be a good thing as he tends to get very overwhelmed around typically developing kids his age).

2.  Related Services:  After you deliberate all your long/short term goals you are to talk about related services   In our case the other school representatives did not feel Case needed ANY related services.  This really threw me for a loop as directly after our meeting I had plans to take Case back to the ER in Norfolk (per a phone call from the ER doctor there) for a second Xray and ultrasound on his hip as he’d been limping and the doctors feared his hip joint may have additional fluid in it that needed to be drained (side note – there was no additional fluid and no surgery was needed and the problem  went away on its own but Case will likely have issues regarding his joints because of his low-tone as  he uses them to control his movement because his muscles are weak. ).  How could a team of educators and school system representatives think after all my explaining as well as multiple evaluations (both medically and developmentally)  that Case didn’t need AT LEAST the consult of a physical therapist.  We got it but I had to really fight for a physical therapy evaluation (we have since fought for both OT and SLP reevaluations to begin additional therapy in school as well).

3.  Frequency of classroom instruction:  Come prepared with a number of days that you think is appropriate for your child.  Because Case is not yet 3, I didn’t think I wanted him in all week, however, when the school reps suggested 4 days, I thought we could do that – especially because Case tends to thrive on the routine and 4 days/per week would certainly create a routine.

Finally, there are a few more anecdotal pieces of advice I want to mention as I’m now looking back on the transition with 20/20 hindsight.

1.  Because we had some issues in theI IEP writing meeting (and afterwards I did end up writing a strongly worded letter to the administrator involved who had had her assistant principal stand in for her regarding my concerns). Never feel guilty for strongly advocating what you feel is in the best interest of your child. ‘Nough said.

2. Try to separate out people (unprepared faculty) from the actual problems/issues (safety concern as s result of not having a PT to consult).  (This piece of advice comes directly from the CDR Infant Parent Program Transition Handbook)

2.  Know that the IEP is a fluid document and you can call an IEP team meeting to alter it at any time.

3.  Share the IEP with any family members involved in your child’s life who were not at the IEP meeting and go over it together (Something I have yet to do but am marching downstairs to do so right now).    If all family members have an understanding of what your childs goals are in the next year,  they’ll be more likely to help you help them achieve those. Case’s development and upbringing is not solely my responsibility and giving others task-oriented information (exactly how the IEP is  written) can only  aid in his reaching his full-potential.

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