Wednesday, March 16, 2011

Mommy's New Mantra

     I'm not really sure if it's an extreme case of "we've really just had enough of winter and need some spring" or what, but the last several weeks seem to have been tougher than most. It seems to me that this has been the winter that just wouldn't end, the snow, so deep on our yard that Jacob couldn't even safely go out to play in it, no seriously, I thought I would loose him or that he would be completely swallowed by it the few times I tried to get him playing in it.
     We can commence with the rejoicing now, an end is finally in sight and spring is coming, I promise !
Being stuck in the house most of the winter is not fun for most people, now try doing it to a child that to a child who is sensory seeking and super active. There is only so much "heavy work" and input you can find to give a 3 year old inside of the house before said three year old starts to become bored, destructive, disobedient, and down right hard to be around.  To say that Jacob has become demanding is putting it mildly, to say the he has really become fresh is also putting it mildly. When Jacob wants my attention and I ask him to wait for just a minute, he starts to demand it by acting out, crashing into me, pulling on on me, making sure he is directly in my way no matter what I'm doing, he yells or screams so loud that your are forced to turn your attention to him immediately because you cannot hear what it was you were originally doing anyway. If he asks you for something and you ask him to wait he will act as though he never heard you and continue to ask the question until you feel like your ear drums will explode. Because his older siblings do not particularly enjoy his company he acts out toward them by screaming at them, crashing into them or even at times hitting them, which really is just a vicious cycle of him acting out, them wanting even less to do with him.......and round and round it goes. I have tried just about everything I can think of to gain control of the situation without losing my mind completely. I have yelled back, employed the patience of a saint, put on time out, sat with on time in, taken away things and ignored, all to no real working solution so far. Even after doing therapy with an OT for several months now, things have gotten worse not better.
     I continue to hold onto spring and some major outdoor sensory input filling hours and my last best hope.  In the mean time I have had to sit down and do some major thinking about the best way to approach this situation before it further spirals out of control. In thinking and researching on line I have worked out some new techniques that I am hoping will work. The first thing I am trying is visual cuing, a daily picture schedule, a big red stop sign, an "If......Then" picture board, and more sign language so that he can visually "hear" the word while I sign it and say it. I will get a large timer so that he can see elapsed time if he is waiting for something. Rewarding positive behavior with things he enjoys, like playing games together or extra quiet reading time with mommy. 
     Added to these new, more visual tools, I have given myself a new "Mommy Mantra" to follow and say to myself when things start to get out of control.
         1. Have patience mommy, he is just a sweet little boy with special needs and right now his need is you,
             his mommy.
         2. Understand mommy, because he is too young to understand his own special needs.
         3. Teach him mommy, use this opportunity to teach him the right way to handle situations.
         4. Believe mommy, believe in yourself, never second guess your ability to be a good parent,
             believe in him, he will overcome every tough spot life puts in his way, he just needs someone who
             will never stop believing in him.
         5. Love him mommy, unconditionally, the same way he loves you.

I guess if I needed to add a number 6 it would have to be: Dirt and mud is our friend mommy, puddles are a dream come true, and rain is just wet. It all comes out in the wash so if "Mud Day" seems best, even if its the fourth day in a row, it's ok, at the end of the day it will just be a ring around the tub and some water down the drain.

Wednesday, February 23, 2011

Walking Shoes

     I have been thinking recently how very far we've come. How far Jacob has come, how he's grown. I wrote something almost 2 and a half years ago, when Jacob finally started walking on his own and I thought I'd reprint it, for fun I guess. Jacob had just gotten, worn, and walked in his very first pair of shoes and I couldn't believe we'd made it that far. So here it is.

October 4, 2008
   Jacob got his first pair of walking shoes yesterday. To most this may not seem like such a big deal, but to us, it is so much more than just a pair of shoes. It's the ability itself to walk. It's how two weeks ago our sweet 14 month old was still just cruising and had only been bearing weight on his legs for 2 months. Those first unbalanced, unsupported steps will forever be etched in my mind. Countless doctors appointments, 2 major surgeries, casts, bandages, sponge baths, braces, and now shoes. Two fat little feet, scared but perfect anyway ready to take on the world. Walking today but running tomorrow. What a long road we've taken to get to this place, it took more motherly strength than I thought I possessed and a little baby boy who was so determined right from the start that it gave me the strength that I needed to face it all. These shoes mean so much.

A diagnosis , or the beginnings of one at least

     This week, along with regular therapy we finally took Jacob to see a developmental pediatrician. This was not your run of the mill, rush in, "ya, ya, ya", rush you out the door because we have others to see, kind of appointment. We sat for nearly 3 hours and shared every detail about Jacob, from birth through now. I feel like we should invite her to holidays at our house now that she knows so much about us !
    So, three hours and much talking and checking later, we have a diagnosis or the beginnings of one at least. Here it goes, Dyspraxia, Sensory Processing Disorder (sensory seeking), Hypotonia and if he has Cerebral Palsy it is very mild. Because Jacob is still only 3 and not yet in school or a school setting she does not want to say that he also has ADHD but it is definitely a diagnosis he will be getting at school age, unless of course he changes into a completely different child between now and then. From what I have been reading lately most doctors do not feel comfortable saying ADHD when it comes to preschoolers, I understand this and will wait it out and see what happens over the next few years. The doctor also would like to run some blood tests and would like us to go see another orthopedist for a second opinion on his corrected clubfeet, his left foot does have a significant curve to it. The left side of his body has always been the weak side so, this may not be a relapse of the clubfoot, but possibly a stronger sign of CP.
     We talked about several strategies to deal with Jacobs needs and, in the coming weeks I will be slowly implementing changes that will hopefully lead to a happier, easier to live with preschooler and an overall more smoothly running household.  I have my doubts about the household in general because none of use have ever been close to normal and why change now right?
    Al in all, a good day. I am happy that we have a solid diagnosis, from here we can work to make sure that Jacob has everything he needs to excel at life.

Friday, February 4, 2011

Starting fresh......Life with Jacob part 2

     After a visit and long talk with our Pediatrician at Jacob's 3 year old well child check we finally started putting the last three years worth of pieces of the puzzle together. Now that much of the attention was off of his now mostly corrected feet, we were all able to look past them and really see in a big picture all the little things we had just pushed aside over the last three years.
     The first few months of his life Jacob had these crazy muscle spasms in one leg, it was like every so often the leg would go totally crazy and jerk and shake, at the time I chalked this up to an immature nervous system. I tried to breast feed but we just couldn't get it to work, he couldn't latch and choked and  I  finally gave up completely at 3 months, I was supplementing right from the beginning  anyway just to make sure he was getting what he needed. Even with a bottle he choked and his sucking was never smooth, it was choppy and "chokey", I tried different bottles, different nipples but nothing helped, it wasn't until he was 8 or 9 months the he managed to take a bottle well. One of Jacob's eyes teared constantly (my daughter had this in both eyes as a toddler so I didn't really think anything of it). When Jacob finally began to smile at a couple months old, only one side came up, the other side just stayed there (the same side that the eye teared). Jacob cannot pucker and is just now learning how to O his mouth but can smile almost normally. He favored one side of his body over the other, even his Early Intervention PT noticed this and commented on it several times. When he bothered to chew food he chewed most things on one side, he was also a "stuffer", he stuffed as much as he could into his mouth and eventually it went down, a huge choking problem that scared me terribly. When he stuck his tongue out it never came out straight, but instead to one side.If you watch him talk now you can see that his mouth slants one way. As for his "red flags" for being on the spectrum, he loved being swaddled way beyond what normal babies are swaddled, I'm talking to nearly two and the we would tuck him into a sleep sack and he would squish himself into the corner of his crib. Jacob avoided eye contact, rarely laughed, didn't answer or look when you called him, preferred playing with things to people, he didn't use words, he at one point actually lost some wordish sounds that he did make. There were other things too but it is just alot to write here so I give you the general gist of things.  In her early notes, his EI special teacher even states that she can't believe that we saw these "red flags" so young and she believes that he is on the spectrum, by the time we "graduated" from her she writes that "she cannot believe how Jacob has turned on a dime, from a child she believed to be on the spectrum to a child that is functioning almost normally".  In looking back we also realized that all the visits we made to the neurologist because of his plagiochepaly, touched on things that we should have picked up on also, mostly dealing with his preference for using only one side of his body. The doctor left the practice and we graduated from the helmet so we just didn't go back (another mistake).
     So now that we start putting these things together the pediatrician thinks that we should look into the possibility that perhaps he had a stroke during birth or that maybe he has mild cerebral palsy or perhaps both. This is an issues we are still in the process of seeking out answers for but in the meantime we did the PT eval and also went through our school district and had OT, speech, and psych. evals. done as well.
     The PT was the first one who felt SPD (Sensory Processing Disorder) was one of Jacobs issues. She said things that at the time we just smiled and nodded (and took mental notes) through, but later ran home and began researching. Things like sensory seeking, proprioception, low tone, heavy work, a whole list of things that answered so many questions. Up to this point the term I was using was "strong willed", but I will save that post for another time. His OT, PT, and speech evaluations came back showing that Jacob had significant delays in almost all areas, including ; fine motor, self help, gross motor, eating, oral motor, swallowing, and sensory processing. Most of his test scores (at 39 months) placed him between 17 and 23 months. He has trouble with focus and now see all the ways he is a sensory seeker (again best left for a future post). The phych. eval came back with some pretty significant delays in daily living skills, coping skills, and fine and gross motor skills. The bright spot in this for us was that his cognitive skills come back at the 6yr 9month age range, again this answers quite a few questions and leads to some pretty interesting monents.
    We took Jacob to another neurologist in late November and among other things he feels Jacob has Dyspraxia which we can understand. He asked to do some other tests but we have decided to hold off and instead take Jacob to a developmental pediatrician first, we just didn't feel "right" about all the tests the neuro wanted to do, and before we do them we want a second opinion. Appointment yet to come.
  Jacob started therapy in mid-November, he goes for PT and OT twice a week and speech/feeding once a week, I do alot at home to reinforce the therapies he receives.  It's only been a few months so we haven't seen huge leaps but I did for the first time get a kiss with a somewhat rounded pucker and after waiting 3 1/2 years, it was the best kiss I've ever gotten! 
     I don't use the terms special needs or 2E very much, I have a hard time, because of all I've read, despite Jacob's many needs, we don't really deal with nearly as much as other parents do. We have a long road ahead, and some days that road seems almost endless, when he is finally down for the night I sit and wonder if it will ever get any easier, I don't have those answers but for the time being I'm patient to wait.

Tuesday, February 1, 2011

Starting fresh......Life with Jacob part 1

     I started this blog months ago with the intent of jotting down a few sweet sappy phrases here and there about la la la.... life here in our little piece of New York State, I got as far as two posts before real life once again set in and the project has sat. Now, I put nimble fingers to key board once again, and this time, instead of la la la fluff, twitter, giggle, life is perfect mush, I will in the key of Jacob.
     Jacob, my sweet 3 year old boy.........the biggest challenge of my life so far, a living, breathing, tidal wave of energy, love and sheer determination since the second he was conceived.  He is exceptionally bright to the point of being considered gifted, he is cute and funny and a whole list of other wonderful adjectives, a typical preschooler, yet far from typical, a list of problems make him "exceptional" or "a special needs" child. Right from the very first ultrasound Jacob has been, and continues to be, my challenge.
     "The tech really couldn't get a clear picture of his feet, can you come in to do it again?" Not a red flag to me at that point, so no problem I went back for another ultrasound and the next call was, "We need you to go see a specialist, someone to do a more in depth ultrasound, a perinatologist, no big deal really, we just want to be sure...." Ok still only a bit worried, I was pretty confident that everything would turn out fine (Which considering all the awful alternatives, it really was pretty ok, I guess?).  After yet another ultrasound we were told our son would be born with bilateral clubfoot, it would not be a big problem, some "light" bracing, all fixed, no sweat. Things never really have the "happy, no sweat fix" that we pray for and this story most definitely did not.
     Jacob was born in July of 2007, his delivery story goes right to the top of my list as worst nightmares of my entire life to date. With all the ultrasounds I got while I was pregnant (6 I believe, maybe 7) they knew he was big, and they figured I had already delivered a 9 lb. baby with my second pregnancy so it would be no problem, I had what they called a "proven pelvis". Those extra 11 ounces must have really tipped the scales because at 9lbs. 11oz. Jacob ended up wedged in tight, stuck for what seemed like forever and should have been a c-section, as they pulled the OB and I both looked up at the same time when we heard  CRACK, she said "that was a bone breaking, you heard it too?"  Yes, I did hear that breaking bone. Jacob was finally born........with a broken collar bone and I had a horribly separated pelvis that made it impossible to walk and carry or hold anything at the same time for months, no bags, no baby, this made doing much of anything by myself those first few months pretty much impossible and to this day if I move the wrong way it still causes me pain.
     At 5 days old we took Jacob to see a pediatric orthopedic surgeon, she looked at his feet and said we'd cast," but they don't really get worse" that what he had, complex clubfeet. Casts on a new born is a nightmare, almost straight leg, from thigh to toes, both legs, on this little baby that just wants to curl his legs up and cozy in, a nightmare that lasted for 2 months before our ortho declared his feet were unfixable through casting and we could just give up until he was old enough for surgery. At this point I know there are people who will question why we sought no other alternatives, you are right, why???? I truly thought we had found the best and only way and that if this doctor said casting wouldn't work then who was I to say different. I will not look back at this point and ask why, because it will solve or change nothing.
     During the first year of Jacob's life we noticed things, little things that at the time we mentioned at regular check-ups but so much focus was on his feet and "breathing problems" (mild asthma & reactive airway) that we never looked at the big picture, we had pieces of a puzzle but were to ?????? to put them together. More about those things in another post. Anyway, in February of 2008 Jacob had his clubfeet corrected surgically over the course of 3weeks and 2 hospital stays, at which time he also had a CT scan of his head because he had started to develop plagiocephaly and it was determined that his skull bones had not fused prematurely so we went ahead and had him fitted for a helmet. Two full leg casts and a helmet, many, many looks and comments out in public, a rough start, but this little boy was determined to overcome it all. Through this whole process Jacob started having some red flags for being on the spectrum, yes even at that very young age. Just before he turned a year old,  early intervention came and did an evaluation and it was determined that he would receive PT and a special teacher once a week to deal with the now host of physical issues and the spectrum issues. He had low muscle tone, favored one side of his body over the other, didn't crawl  but dragged himself with one arm only, some many other things, the ortho even figured he wouldn't stand or walk until 18 months, again his determination and strong will took over and whatever he couldn't do he found a way to compensate (and to this day is amazing at compensating) and even stood just before his first birthday and walked before 18 months. 
     Moving forward a few months and EI is going very well and we are overcoming many of his "spectrum" red flags with the help of his teacher (and I tell you she was sooooo suprised by this) , he used many signs to communicate but spoke very few words and mostly just made noises. As we approached Jacob's second birthday we started speech with EI as well. Within months Jacob went from mostly signing to and absolutely incredible vocabulary. He still had and still has oral motor muscle issue, but his vocabulary was amazing, it was like opening flood gates, an amazing turn around!  The special teacher had stopped coming by age 2 and our speech teacher felt that Jacob's vocabulary had come so far and whatever oral muscle issues remained could be dealt with when he went to school (I know now what a mistake we made in letting her go) , by the end of the summer of 2009 our PT decide to take a full time job elsewhere and Jacob refused to accept a new PT so we took it as a sign and opted out of the program. Yes, I know, it was a huge mistake, he was in no way ready and by the following summer (this past) we decided it was time for an new eval as we really began to see all sorts of issues present themselves.
     This post ends here, but really it's just beginning, stay tuned for part 2.