June 2019: Ending third grade strong with good marks and a sense of relief. Ben worked hard at school, therapy, and all-around living this year. He is stronger and hugely happy to have summer straight ahead of him!
September, 2018: Well.... it only took four weeks for Ben to learn how to walk! He is now walking with a more regular heel-toe gait pattern and with totally straight legs! He is not crossing his legs together, he is not dragging his right foot, he is not getting his feet stuck behind one another any longer! He is putting one long leg in front of the other and stepping with flat feet and moving himself in a nearly independent manner with his gait trainer! The look on his face EVERY time he walks is priceless! He LOVES his newfound independence! He even went back to school shopping by walking around Target to pick out school supplies!
July, 2018: SPML surgery was on July 18. It was a 45-minute surgery. Ben woke up from recovery and once he ate and drank, we drove home from NJ! He went to bed in his own room that night. When he woke up the next morning, his legs were straight! For the first time since he was a baby, he could stretch out and sit with long legs! The change was incredible. Now that Ben has access to all of his leg muscles that were too tight before, he is now 're-learning' how to walk and how to strengthen those muscles to put them to good use!
April 2, 2018: So,not only is Ben crawling on all fours as his main way of moving now (like, all the time), but he has been able to pull up to a tall kneel by himself! (as evidenced by the picture to the left). The next step is putting one foot down flat and pushing up to a stand! He can't do this until he can put his feet flat on the ground. And THAT is one reason we are pursuing the SPML procedure for Ben in July. He is literally just steps away from standing up on his own. He WANTS to do it. Now, we are going to give him all that he needs - muscles that work for him - so that he CAN do it on his own.
March, 2018: Ben's school reports he has been frustrated recently and has been acting out his frustrations. The insightful and helpful staff at school thought it may be helpful to give Ben more independence to help ease the frustration that we all believe stems from getting bigger and understanding his limitations. So, he has been able to go through the halls "without' his one-on-one aide by his side to deliver important packages to the secretary. Today, while delivering his backpack before school started (hectic morning and we forgot to send it, hey it happens), I was able to witness the BIG smile across his face when he met me to pick up his backpack, but then took a different route than his aide to return to his classroom. To me, he was just one of the kids roaming the halls trying to get to class before school starts. TRUE independence, which of course, made me tear up pretty good.
December, 2017: Well, it is official - we have a crawler. A hands and knees crawler! No more belly crawling for this strong little boy! AND, he is getting into a short kneel all on his own. AND, he is pulling up to a tall kneel all on his own while holding on to something! We have decided his personal goal at home is to get up out of bed BY HIMSELF and situate himself in his walker so he can begin to walk out of his room independently. Now, we are years away from this happening. But, it all starts with intention.
September, 2017: Ben is loving second grade! It's more demanding, yes, but I can see how much he loves being with his peers and LEARNING. Spelling and reading - he is knocking them out of the park! Math is much harder for him.
June, 2017: Ben has ended first grade in a very big way. His teacher has sent me video of him reading - with his Accent 1000 device - an entire sentence. This was one of his goals this year. Through hard work at school and here at home, he managed to crush that goal! We are so very happy with the success of his first year at the public school. He (and we) are blessed with a very dedicated and committed school district!
April 4, 2017: Ben said a whole sentence with his device! We've been working on saying more than just one or two words at a time with his device (like verb+noun or subject+verb, and so on), and at school he said an entire sentence with very little assistance! In case you are wondering, that sentence was, "I like summer because I swim." !!!!
March, 2017: When we read books, Ben has been taking his finger (just getting that little pointer finger out is hard work!) and tracing over the words as I read them. He has become even more interested in reading books, now that he is beginning to recognize letters and words. He actually READ a sentence the other day using his Accent device! He knows site words, he knows how to spell some words, and with enough work, he READ the sentence using his device. It was a BIG DEAL!!!
January, 2017: I am feeling very validated and sure about our choice to push for Ben to be in the public school. The administration has been great to work with, the teachers could not be more dedicated and loving, and I am certain that he is exactly where he needs to be.
December, 2016: I am not shocked but TOTALLY HAPPY that Ben is learning to spell! He is identifying sight words with more ease on his speech device, he is using his phonetic alphabet to spell words, and he is staying focused long enough to keep learning! Some days he feels like working at it more than others (just like any typical 1st grader), and I must say that he totally rocks the -at family of spelling words. He is learning to count, too, although it seems Math does not come as easily as Reading for him at this point. He uses his Accent speech device to communicate as well as do his work in school and his homework at home.
Nov/Dec, 2016: It has been a very busy couple of months! We have all been working hard Ben, the hardest) on helping Ben transition from his Approved Private School for children with extra needs to the public school district elementary school. With a ton of happiness and gratitude, we are so pleased to say that Ben is an official 1st grader! He is adapting nicely to his new schedule and environment. It is much more demanding, but with love, patience, and dedication, he is making slow progress. And, that is all we ask for - progress.
July, 2016: Well, I think I have heard the words that every mother longs to hear from their child - MA! Ben said 'Ma' two very purposeful times over the last week or so! My heart most certainly did leap each time, and we hugged and hugged (ok, mostly I was squeezing him with tears welling up while he tried to squirm out). So, so proud. And hoping and praying this is the start of something.
January, 2016: Throughout the course of this year, Ben has slowly but steadily been integrating into his our school district's elementary school. The goal being for Ben to start kindergarten next year! He is very happy to be in there, and I can see him (and the district) developing his readiness. In the meantime this winter, Ben has been enjoying sled riding (he LOVES going fast down big hills) and playing with his favorite Christmas toys, his Miles From Tomorrowland figures!
August-September, 2015: Ben has had some time off from school, and in his spare time, he's been rocking up to hands and knees (from a seated position), and he slowly has started sitting his bum back and coming into a short kneel! This is a big gross movement change for Ben. He even, when in all fours, successfully moved his left knee forward and attempted a full on crawl! Although he's been enjoying the time off, he is anxious to get back to school (and so is mommy, sorta) :)
Summer, 2015: Ben has had a busy summer! After attending Conductive Education summer camp, he had his ESY at his school and was very excited to return to both, seeing friends he hasn't seen in a long time. Ben got to enjoy the beautiful mountains of Pennsylvania in August, go kayaing and camping at Lake Raystown, and go to the beach in New Jersey to catch the sun and surf. (He was the best boogie boarder on the beach, in my opinion.) As summer winds down, Ben is taking it easy, highly anticipating the return to school. We have a feeling this year will bring lots of new and wonderful changes!
December 14, 2014: Ben got a time out today. He has become really good at throwing tantrums, especially when it comes to TV. He doesn't get out of being disciplined. He has figured that out and has turned to the fine art of manipulation to get out of it, but I'm onto him!
December 8, 2014: Well, it has been 5 years today since we received the diagnosis of Ben's polymicrogyria. Actually, Dec 10 is when we found out about the polymicogyria. Today is the day we found out that Ben's brain is malformed and that he may have some challenges in life. I will never, ever forget the feelings of that morning. The smell of the office, the feel of the warm tears on my face as I walked out of the office, the call from work I got as we were leaving....how tight I held onto Ben as the doctors spoke, how I wouldn't take his face away from my lips. I needed to be close to him.
October, 2014: Ben is doing well at his new school. He has met many new friends, he has new teachers and therapists, and he has a brand new schedule and routine, all of which he has adjusted to nicely. Ben is amazing in that he can role with the changes so easily. That's really what his life has been all about. He gives us such strength; he has so much to teach us.
August 13, 2014: As we wind down the summer, we are reflecting on the many blessings that we as a family have. We are overcome with gratitude, and we feel incredibly blessed to have our amazing family and community.
July 20, 2014: Ben just finished a 4-week summer camp of Conductive Education. By the end of camp, he was walking out of the classroom with canes! Of course, the conductors were offering lots of assistance, but Ben was doing it, he was using canes (instead of a gait trainer or Conductive Ed ladder) for walking. It is in our line of site! We have always envisioned Ben doing great things, but to see the start of him walking with independence was tearfully joyous. We are eternally grateful to the people and conductors at Conductive Ed. Ben is learning SO MUCH independence there!!!
May 20, 2014: Ben has been consistently crawling around the house. He just picks up and heads over to where he wants to go. This is, in its truest sense, independence. He has the drive, the strength, and the desire to do this. We have been working towards this for SO long now. We've been encouraging Ben to just GO where he wants to go - go by crawling, rolling or however it is he wants to get there. Now, it is happening - he is mobile! He is making this happen because of his own desire. This has importance for so many reasons. Proud and ridiculously happy!
March 29, 2014: Ben crawled out of his room this morning and into our room to give us the biggest and most wonderful sight to wake up to - Ben at our door with a huge smile of accomplishment!
March 20, 2014: Ben has made it a regular practice to crawl out of his room after naps and when he wakes in the morning! We are ALL quite giddy about this new accomplishment! He has even taken to crawling into his sister's room to wake her up, too! Ben has shown some tremendous motivation these last few weeks. He is truly proving that 'when there's a will, there's a way'.
February 1, 2014: There have been times recently that Ben has ASKED if he could get in his gait trainer (his walker) so that he can walk around! LOVE LOVE LOVE that this is happening! There is a fire burning in this one, and he has more determination and drive than I have seen yet.
January 6, 2014: Ben has been using a 'big box of words' for his verbal communication. He has started using a device (like a Dynavox) made by Prentke Romich Company (PRC) which acts as his voice. It can be very complicated (even for me) to get the hang of it, but Ben's goal is to be comfortable using it by September of this year, so that he may use it in school. (Yes, he starts kindergarten in September.) It takes quite a lot of dedication and focus, but I have no doubt Ben will pick this up as he has most other things.
December 31, 2013: Ending the year with a bang - Ben got his new wheelchair today! He has taken mobility therapy the last few weeks to learn how to control it himself. He picked it up in no time! He absolutely loves this new-found freedom.
December 26, 2013: Christmas was fantastic; we mostly used it as an OT opportunity for Ben to open his presents! And he did better than ever with his bilateral hand control - using both hands to rip open the paper to reveal the gift he received.
November 19, 2013: Ben has begun to crawl a little around the house! Just last night, because he wanted his dad who was in his sister's room, Ben crawled from his room to his sister's room completely unassisted! As his proud brother and I looked on, we noticed he was starting to get his little bottom in the air to try to use his knees more to propel him forward. He was so proud when he got to her room and was able to knock on the door! He has also been crawling out of his bed in the mornings. We find him on this floor, either sitting there waiting for us or trying to get to a toy to play with. This is a HUGE accomplishment - it is greater independence! We are so incredibly happy for Ben and filled with such love and admiration for this boy who has more strength and determination than anyone I know.
October, 2013: This past summer has been so great for Ben. He is communicating non-verbally so nicely with us, using a few signs and gestures. He is using his gait trainer (walker) and moving it independently! That means he is walking by himself with his gait trainer! This is a huge development. Even though he doesn't love getting his arms strapped in, it's not long before he realizes it gives him some independence to walk around the driveway or the area that his friends and family are. This is a beautiful thing, for both him to experience and us to see.
Most recently, he has started to belly crawl! This one is big, because in order to do this, he needs to have very strong and coordinated arm muscles. On a wood floor, he is able to crawl from point A to point B without assistance! Soon, he will figure out how to incorporate his legs so that it becomes easier for him. Our next goal is then to crawl on hands and knees.
Ben has made some amazing and significant strides in the last few months. We feel so blessed and fortunate to be on this journey with him.
April 23, 2013: My loving little boy can now express his love for us by blowing us kisses! He has learned to put his hand to his mouth, and although we are working on pushing it away to signal the "blown" kiss, those who know him know that he is trying to send his love when he puts his open palm to his mouth.
Ben also has learned to point to himself when wanting to say 'me' or show ownership in something. In his activities of daily living, he is really beginning to want to participate. He very much wants to participate in trying to get his little sister in trouble. And finding much success, actually.
February 28, 2013: Ben started pre-school on Monday, and he absolutely loved it! He did so well and felt so comfortable there. I could tell he was really enjoying the socialization and playing with the children. He participated in the activities, LOVED circle time, and got a kick out of riding the bus. I can't say that I'm surprised - because Ben is such a loving and social kid - but I am SO happy for him. I went to school with him on the first day and just observed. And I couldn't help to hold back a tear not for the typical reason ("oh, he's growing up so fast") but because I was so full of pride and happiness for him.
February 5, 2013: Tonight, after bath, while we were reading books, Ben reached out for his comb, used his right hand to position it to hold it correctly, and started to comb his hair. He was moderately effective in doing it - but then he reached out to comb his brother's hair and did a pretty good job! I am thrilled that he was able to manipulate the comb to hold it correctly. He is started to have more interest being an active participant in his activities of daily living.
January 12, 2012: Ben has begun shaking his head to say yes! We've been working on this for at least a year now, and he can finally do it! I am reminded of just how much Ben has learned over the last 3 and a half years, and I am moved to tears with joy and appreciation for who he is.
January 6, 2013: We all had a nice Christmas and New Year, and I think Ben got everything he wanted from Santa. He is really into trains, and he now has more trains than we have room for! Ben has recently begun to hold his sippy cup himself, and with a little help coordinating everything, he is able to hold it while he drinks it by himself! He is SO proud when he is able to do this. It usually doesn't occur too often but when it does, we are all proud. Ben continues to light up a room just by being in it.
November 12, 2012: So many updates! First, Ben has been using the iPad to communicate. He has finally learned to isolate that little pointer finger, so now he can use the iPad in a functional way. We have started slow - using it for food preferences mostly - but it has taken Ben all of about 2 minutes to figure out its usefulness, so we will begin using it for many more functional purposes. Second, Ben has been trying to get into the 'all 4s' position from sitting. He has been doing this without assistance, and he has been starting to rock back and forth like he wants to crawl. Although he is still learning how to get onto his knees so that they are beneath him, this is a huge step in his independence. And finally, the other day at the super market, Ben was in the car shopping cart. As we were stopped looking at some products, I glanced over at Ben, and he had wrapped his arms around the steering wheel and was trying to pull himself up to standing! He was doing totally unassisted! These are MAJOR developments, and we are so impressed with Ben's increasing abilities and desire to do these things,
October 20, 2012: So, I'm pretty sure that Ben has spoken the word 'more' at least twice! He said it in reference to wanting to brush his teeth more one night (yes, seriously) and then again when wanting to have more drink. It was pretty clear. Although, like most 3 year-olds, he has trouble with his Rs. LOVE this and love that he is really trying to babble recently.
September 25, 2012: During dinner, Ben picked up some food with his left hand and put it in his mouth!! He did it as we encouraged him, and we cheered like crazy when he did! He was SO proud of himself, clapping and screaming with delight. He knew that what he was doing was awesome, and he continued to feed himself 3 or 4 times. It wasn't the most efficient way of feeding (he didn't get much in there), but he kept trying and he got food to his mouth. Our hearts are FULL of happiness tonight.
September 7, 2012: Ben started back at Conductive Ed this week after some time off. He was SO happy to be back - he did SO well! He was happy to participate in all the activities; he wanted to do everything! It was like he craved this classroom and the socialization that comes with it. When I used to take him (when he was much smaller - about a year and a half ago), he would struggle to do lots of the activities and would cry sometimes. But now, NO crying or complaining - just charming the ladies and having fun! The best part - he is WALKING with a ladder. WALKING. He stands by himself at a ladder, puts one foot in front of the other and - needs help pushing the ladder - but MOVES his body nonetheless. This is a huge development, and it brought me to tears to see this happen. He is back where he needs to be in Conductive Ed, and we are so so thankful.
August 14, 2012: Ben got his new glasses last week. They are Aaaaadorable on him! From the moment he put them on, he had an A-ha! moment where we could clearly tell that he could see differently - better. He pointed out an airplane far far away in the sky the other day. Success!
July 30, 2012: Now that summer is here, we have learned that Ben absolutely loves swimming! He would stay in the water all day if he could. Ben has been doing very well. He has started to try - on his own - belly crawling. When he gets to his belly, rather than roll to where he needs to go, he begins to try to belly crawl! He still needs support at his feet to push off and some at his arms, but the motivation is there!
April 9, 2012: Ben has a couple signs that he uses now pretty frequently and accurately: eat, please, more, all done, and drink. Still working on the latter two, but it's coming. This is SO exciting! Ben has also been bearing weight on his feet really well - standing has become part of our daily routine now. And he will sometimes take steps on his own (willingly!) when we hold him under his arms. The other day, one of our therapists was helping him walk to his chair for lunch, and I heard the pitter-patter of HIS feet for the first time.
March 2, 2012: Well, folks, I do believe Benjamin signed EAT this morning! With encouragement, he brought his hand to his mouth to signal EAT. He is so smart, my boy...
February 26, 2012: Benjamin successfully and appropriately used his first sign language today. MORE! He now knows how to sign 'more' and does it quite frequently. I do believe this is the start of something big.
February 21, 2012: New hand splint for Ben has been helping his hand stay open and is helping the ulnar deviation too. Glad it finally came in. New splints for his legs and feet too. Onward and upward.
January 11, 2012: Ben has had an awesome several months. Ben knows that he can roll to places he wants to go (his high chair, to get some toys, etc). Although a lot of the time, he is fairly happy staying put. When he wants something, he is learning to roll faster and faster! We have been working on crawling on his belly - and he is slowly getting the hang of it. He still needs lots of help, but he gets the concept. Ben has also begun bearing weight at a greater frequency and length of time. Standing at the window (during this cold weather) has been one of his favorite places to loiter. We can stand him up and just hold onto his hands! His core strength is helping with that. We need new DAFOs and shoes for him - his feet are finally growing! Ben's language has also been changing. He is still non-verbal, but he has learned that he can point to what he wants, where he wants to go, what he wants to eat. Ben is now enjoying some success in communicating his wants and needs. His fine motor has also improved. He picks up, reaches, and plays with all kinds of toys. His left hand is still clearly dominant, but he will functionally use his right hand to manipulate the toy as well. We are just thrilled that he is at least inviting it to play along :-) And it just seems that Ben's overall cognition is taking leaps forward. He understands most of what we say to him. He can take 2-step commands, and he is very responsive to us when we ask him to do things he does not want to do...! And we began this new year with some very good and exciting news. His intraocular (eye) pressure check was low - which means he is at less of a risk for glaucoma at this time. We find ourselves more and more in love with him every day, and we are reminded of how blessed we are.
October 12, 2011: Now that Ben sits by himself, he is working on catching himself when he falls over. When he does fall over, he has started to try to get himself back upright again. He uses his core muscles, and with help, he can get himself sitting up.
September 26, 2011: What a fun and successful summer we've had! Ben continues to impress us! Now, he has learned how to sit entirely by himself! ALL BY HIMSELF! He sits perfectly with a straight back and can play with any toys around him. It is a beautiful thing to see. We are so very proud of our big boy. We are now really focusing on his protective reflex of catching himself when he starts to fall.
He has also started to pointing to things he wants (food, toys) and places he wants to go. It is a huge step in his ability to communicate. Ben has really started to be an active participant in his day to day activities. And he still holds the title of Mr. Personality!
May 1, 2011: Benjamin has been using 4x6 cards to make choices of things that he wants to do. For example, he is given the choice of three cards: one with a picture of his crib, one with his sippy cup, and one with his food. And he will pick the one that he wants at that given time. Although he can't yet talk, he is finding more and more ways to communicate with us.
April 6, 2011: After being in conductive education for about three months now, Ben has been sitting up better and playing with toys a lot more. He is wanting to move now when he's on his belly and is learning to crawl. He has started to bear weight on his legs and feet now, which is a big switch from just collapsing when we stood him up.
February 2, 2011: I'm pretty sure that I see some nice improvements in Ben's sitting skills. We haven't even been using the Bumbo recently, just sitting him on the floor against the couch. His core muscles are strengthening.... his whole body is getting stronger.
January 19, 2011: Benjamin has decided that one of his favorite things to do during bathtime is splash! He learned how to do this months ago, but it wasn't until now that he goes full on crazy splashing as much as he can - getting water everywhere including all over his face and eyes which makes him enjoy it even more! It is quite possibly the most fun I think one can have during a bath!
January 10, 2011: We opened the new year with a new learned activity - how to drink from a sippy cup! Benjamin has been using a sippy cup for all of his drinks since Dec. 29! He is slowly getting his oral motor muscles coordinated. No more bottle!!!!
December 20, 2010: Ben has been using his voice so much recently. He has started making more frequent consonant sounds, and although he doesn't string them together, he does make other sounds that sound like multi-syllable words. He REALLY squeals and laughs at his brother! His real voice has started to come out more - and he realizes that he can use it for effect now.
We've also received both his walker (a few weeks ago) and most recently his stander. Both of these pieces of equipment will help him to learn how to bear weight through his feet and eventually put one foot in front of the other to walk. He has started to bear weight through his legs and feet for very short periods of time and with maximum assistance (me holding him). But he has already shown great interest in using both the walker and stander, so watch out world, Benjamin is on his way!
November 11, 2010: Benjamin has officially become a roller! He has figured out that he can roll all over the floor to get toys that he wants. It's GREAT to see him be able to roll and be so proud of himself. We are beyond delighted; Ben has taken his first steps to being mobile!
October 27, 2010: Ben pulled his sock off today all by himself!! He was sitting on the couch, eyeing it up. He started leaning forward reaching to get it, when he fell over onto his side. This is a common event these days, as he is reaching so much more for toys around him, that he falls over more often in his quest for stuff. BUT he still continued - in earnest - to get that sock off. With a little encouragement from me (mommy), he pulled it right off! A very proud Mom (and Ben) clapped and kissed for hours after that to celebrate....!!
October 19, 2010: Benjamin had the opportunity to take a trial run of Conductive Education therapy today. I think it's going to be just what he needs. He was able to keep up with the intensity of it (he's a hard worker), and it was really appropriate for his needs. We're really excited!
October 13, 2010: Benjamin rolled over all by himself today!!! While playing on the floor, he just flipped right onto his tummy, like he had been doing this his whole life. He did it with such ease, and in perfect textbook form. It was the most exhilarating thing to experience - and to see him move so effortlessly. He stayed on his belly for a few seconds, then kept on rolling onto his back. IT WAS AMAZING!! We are so proud!
October 12, 2010: During meals, Benjamin is taking his spoon (grasping it properly) and trying to get the food in his mouth! He has succeeded on several occasions on getting the spoon in his mouth and chewing on it! Unfortunately, the food had long since fallen off - but we are on our way to self-feeding! Benjamin, you are the BEST!
September 2010: Benjamin is rolling from side to side (from his back) and reaching out to grab the toys he wants. He is using his left hand much more than his right, so we investigate the idea of trying restraint therapy.
August 2010: Benjamin is starting to sit up straighter. He is developing more strength and muscle tone.
July 6, 2010: Benjamin's first birthday! We celebrate with a huge party and lots of love.
June 3, 2010: Benjamin ate a strawberry muffin! He was able to chew it up and swallow all by himself. This is a BIG step!
May 2, 2010: Benjamin is diagnosed with focal dystonia in his thumbs. He is fitted for hand splints to keep his thumbs open so he can functionally use his grasp.
May 2010: Benjamin starts to experiment with rolling from his back to his side. Very slowly, and with help, he can role to one side.
April: Benjamin has begun to take an interest in playing with toys. He has also learned how to tri-pod with assistance.
February 22, 2010: Benjamin is making strange movements that we think are seizures. Take him to the hospital for an EEG only to find he is diagnosed with acid reflux. His EEG is completely normal. A HUGE SUCCESS!!!
February 2010: Ben is starting to hold his head up on his own
January 2010: Developmental therapy, OT, and another PT is added to Benjamin's list of therapies
December 8, 2009: Benjamin is diagnosed with Bilateral Frontoparietal Polymicrogyria.
November 4, 2009: Early Intervention at home begins with PT and vision therapy.
Sept/Oct 2009: We notice Benjamin not interacting much and not reaching his milestones. We also notice a severe left gaze - he can't seem to stop looking to the left with both his eyes and head. An MRI is ordered.
July 8, 2009: Benjamin receives the diagnosis of bilateral congenital cataracts.Benjamin has a full cataract in his left eye and a partial cataract in his right eye. The left one will require surgery on July 13, 2009 - one week after he was born. The right cataract does not need to be removed, as it is not impeding his vision in the right eye.
July 6, 2009: Benjamin Richard Adams is born!