Tuesday, May 20, 2008

Buddy Bike

I am sitting here in wonderment about an accomplishment my family did together. We rode and rode and rode a bike, all of us just this past Saturday. When I say rode, I mean 20 miles rode. I am not an avid biker, in fact one really couldn't call me even a social, intermittent, periodic or sporadic bike rider either. I don't think that I have ridden collectively 20 miles on a bicycle in my entire adult life, much less on one occasion.

I received notice about an organized bike ride for the special needs population organized by a company that distributes these adaptive tandem like bikes that puts the child on a seat in front of the adult. There are 2 seats, 2 handle bars, two sets of pedals etc. I had seen this Buddy Bike in advertisements for the last year, maybe 2. My son has severe balance problems, severe impulsivity issues, short term memory problesms as we all know if you have read my other posts.

Anyway, being as vertically challenged as I am (5' 1/2" tall~ if you are as short as I am, you would cling onto that 1/2 inch too so stop laughing.) and the fact that my son has such limitations I was very concerned about the size of the bike. Would I be able to reach the ground with my feet while still on the seat at a stop without tipping the bike, my son and I over at the same time? Since the last bike I purchased was probably from Walmart and I am sure cost less than $75.00, I was very hesitant to invest that much money into something without trying it out first. The Buddy Bike does have a steep price tag if it is something you will only use a handful of times.

I was able to ride the bike with my son for about 5 miles before I called in for the troops to help me (aka husband to switch and take my son on his bike) It was pushing 90 degrees and I am certain 100% humidity and what seemed like an uphill treck the whole way. Probably wasn't, I do like to exaggerate to make a point.

Anyway, this bike is a remarkable invention. I am sure you are wondering if I opened my wallet and shelled out the 1200.00 plus US dollars to take my very own home with me. I did not last Saturday. This is NOT to say that I won't at some point. I probably will. But my situation is that I have my son that is 7 with disabilities and a son that is 6 that is typically developing. In all actuality, at this point of our lives, my husband and I are NOT avid bike riders and would maybe go out once a month for a bike ride as a family. We live in the urban sprawl of a mid size city so for safety purposes we would have to go to a designated trail which there are several around. But that means loading the bikes and kids into a car and driving to one of the entrances of the trail. I am not going to do that during the week that is already full of therapies, doctors visits, tutors etc. There isn't the time. Plus, where we live, I would not feel safe riding the bike even around my neighborhood and concentrating on my 6 year old at the same time.

I think that when my 6 year old gets a bit older and bicycle and road safe savvy, my child with disabilities may have learned how to tolerate the motion of peddling the bike, then I will be purchasing this bike for our family. If it were only a question of riding myself with my son with disabilities I would definitley purchase.

There is a new business that actually rents the Buddy Bike out within a 35 minute car ride. They rent out all kinds of adaptive bikes, recumbants, hand bikes etc. I can't wait till next time we get a free afternoon on a weekend to head down there are do a much shortened bike ride.

Thursday, May 15, 2008

Bad Behaviors and ABA interventions and coping with sensory intergration difficulties

For over 3 years, I struggled (and still struggle somewhat) with the question of was this part of his disability (not being able physiologically to moderate his own emotions and behaviors, or was it manipulative behaviors?) Even the specialists can't give me a definitive answer and stick to it. One visit, the neurologist would tell me that he was having partial complex kind of spiking activity in the temporal and frontal lobes on his EEG which are the areas ofthe brain that control behavior (frontal lobe ) That part of the brain was also damaged. The very next visit, (a couple of weeks later)he said to me that it was his opinion my son had autism. His thoughts were "it doesn't matter where the behaviors are stemming from, i.e. diet, genetics, C.P., epilepsy or some unknown etiology, the results were the same...autism) The PDD diagnosis had been brought up in the past and it was diagnosed early on but only secondary to C.P. Whatever that meant. But then, I had multiple other specialists tell me he DID NOT have that, it was a direct result of HIE. The neurologist mentioned to me that there is a higher incidence of Autism with children with Epilepsy in addition to a higher incidenceof children with Autism with C.P. I have since been able to substantiate the epilepsy/autism claim. But anyway, I just went wayoff on a major ramble. With David, he doesn't tolerate change well at all. So, whenever thes chool year changes, teachers move, we take a different route home, therapists move on, his transition is strained to put it mildly. When he turned 3, I realized he needed intensive intervention to be able to pull it together to get anything out of his therapies. I amsure his PT/OT/andSLP all had to take a Valium after his sessions. I put him in ABA therapy program. Not as intense as Discrete Trials butthe same idea. 2 hours per week at first. We noticed some response to the therapy but not nearly as much as we would have hoped. At one point, we reached 10 hours (one on one with a behavior therapist)per week which did show the greatest results (but it was too cost prohibitive to continue indefinitely) David really responded very well to Very consistent, very black/white reward systems. He did best working one on one, for a food reward, or the chance to play with his favorite toy for 2 minutes. Requests were broken down in order to be measured into very small increments. When he would have a tantrum,one intervention was to count to 10 out loud. When he could keep it together until I reached 10, then he could come out of the time out chair. I believe he learned by rote memory how to count to 10 that way. Repetition, Repetition and more repetition. the ABA therapists would use alot of "modeling" or "teaching" what an appropriate response would be. If David would turn his back and tantrum becausewe asked him a question, I would get down eye to eye and say something like "this is not how we act. When we are told to put a toy away, this is what we do...then we would model the behavior (and say what it was that we were doing...we are now standing up, we are now going to walk to the bookshelf, etc.." this is what worked best for David. I am really simplifying things here. He was in ABA therapy prior to having been diagnosed wtih Epilepsy, btw. A year into this intensive therapy I pulled him out because he was able to maintain appropriate behaviors in school and other settings. Now, last year he started Kindergarten. The summer before he had a breakthru seizure (lost consciousness and convulsed) while on theTrileptal. Up until that point, we were only treating the EEG, not any visible, known, witnessed or suspected seizures. Anyway,We increased his dose, and started noticeing increased behavioral issues(not sensory, but behavioral) but it was in conjunction with other outside stressors. By the time Kindergarten started, he was not doing well. I was called to the school about 3 times per week. IEP meetings, Staffing meetings, you name it. Because of physiological side effects(g/i disturbances) from the increased Trileptal, I decided to try changing his meds to Keppra. His teachers, aides, the counselors, psychologists, principal CAN"T believe it. He is a completely different child. He had a tendency to drop to the floor, roll around kicking, screaming and flailing without any known or specific triggers, several times a day for up to 30 minutes each time. Very disruptive to an academic setting. There isn't any way we knew for sure or could rule out seizures because he wasn't monitored on an EEG machine at school, but the 2 psychologists after witnessing these outbursts were both in agreement they weren't seizures. Anyway, We are going on 6weeks without any calls from school. So, maybe we have hit the right medicine, the right dose. He may have developed Epilepsy a long time before, but was never diagnosed. Too hard to speculate. About the sensory stuff. The behavioral therapists told me how to ease him into things. First off, never expect to actually sit thru an entire meal at a restaurant, sit thru an entire movie, or complete any task to entirety. My son's expressive language was severly limited, but his receptive is very good. It really helped if I would tell David what to expect from a new situation before we went, explained to him if we were going to go on a different route becauseI had to stop and get gas (whatever it was). If we had to dosomething that I wasn't sure what to expect, his negative reactionswere tremendously exagerrated.If we were in a situatin that was overly stimulating and disturbingto him, I found that it helped to bear hug him very tightly. If possible, I would sit with him with his arms crossed in front of him with my arms holding him and his arms tightly and firmly in place with my legs keeping his legs from kicking so that he couldn't punch me or kick me. I would then very calmly and softly explain to him that he was safe, what was happening etc. I know that my personal trainer thought I was a victim of domestic violence from all of thebruises I had. That extra sensory input seemed to allow him to process a bit more effectively. It calmed him down within minutes most of the time. His OT has him wear a weighted vest in school which seems to help also. Believe it or not, Cranio Sacral therapy seemed to really help with sensory integration. When we are in the pool a great exercise I learned from Aquatic therapy ws to have him float on his back(obviously) and keep his body as straight as he could. I would cradlehis head in my left hand, and with my right arm try to stabilize his body with the least amount of support while maintaining safe practices. The goal was to work up to barely touching him as he floated. But I would also guide him thru the water backwards or Iwould have his body circle around mine. Sorry if it is too hard to visualize. We also got a mini jogging trampoline (big lots for $25)with a handle which helps him with balance and sensory integration.

And then there was Two, the reaction to having a second child

I had a traumatic birthing process with my son. As part of my"recovery" my OB gave strict instructions to get back to business as soon as possible to help with healing. Armed with protection, we complied. Well, apparently the only fire sure 100% protection is abstinence. 357 days later,baby #2 was born. The first 3 months I didn't really know I was pregnant,and the next month I was in denial. The following months were characterizedin SEVERE anxiety attacks, panic attacks, and just plain old severe clinical depression. I made sure the new OB was on board with a planned C Section no later than the start of week 38. I did not want to go into labor at night,to meet up with another doctor at the hospital who would make me delivernaturally again. After that, I didn't stress about a traumatic birth, only about the C Section. And did I stress. I did not want the child at all but Iwas in a marriage, a good marriage with a white collar professional, so I couldn't give up for adoption or abort. I did not form any sort ofattachment to the child when it was in utero. Didn't have any excitement about much. As I was being rolled into the Surgical room for the C Section,I said outloud, "I don't want to do this." The OB just calmly said " well, it is a bit too late now, it is being done and you are going to be ok." My poor husband was just as freightened as I was, so he wasn't much help. LOL. Once my #2 son was cleaned up and brought back to me (I was still in the operating room) I had that instantaneously overwhelming flood of emotional Love at first sight. I hadn't had that with my first son because as soon ashe came out, the flood gates of doctors stormed the room and took over whilemy OB tended to my injuries. This time around for you, you will be more aware to your body and your pregnancy and can react accordingly. I will tell you that shortly after my#2 son was born, their pediatrician said "I know you don't realize this now,but this is the biggest blessing for your #1 son. He will be more of a motivator than all of the therapists combined. That has been VERY true. My #2 son helps "teach my #1 son how to play". The downside, , is that #2 son wants another sibling now. He wants a brother he can play with normally. But he is only 5. He loves his brother tremendously, keeps an eye out for him and has taken over the big brother role.

Disciplining a Special Needs Child

How do we know if a bad behavior is just a bad behavior and not something with a medical cause or a result of their disability?

We have mostly figured out what his triggers are for tantrums. The ones out of nowhere dropping to ground for lengthy periods of ime with extreme exhaustion afterwards are probably seizures or just a complete shut down from sensory overload and the subsequent inability to regain his composure. My son can't tolerate change in a civilized manner. If he likes doing something and that activity is over, he can't process (or wasn't able to when he was younger at all, better now) the idea that he can do that particular activity later. He would also tantrum when we were going to do something he couldn't do or do well. Overstimulation would set him off, as he couldn't process all that stimulation. If he wanted to do something (like press the button for the elevator and his younger brother ran in front of him and pressed it first, that would also start a meltdown(understandably)). We do EVERYTHING possible to divert or avoid these meltdowns altogether. When he does something down right mean like hit his brother for no apparent reason (obvious jealousy) then we discipline. We also do a strong behavior mod. regimine with him. If he acts out we sternly tell him that it is not ok to act like that, explain what is happening and what to expect in certain situations that may be new to him. I am not perfect, I have many parenting faults. Right now, and for the past 3 years we have been toilet training. I have tried every method, read countless books, consulted many specialists. My son does not poop in thepotty at home. I have in sheer desperation scolded him too loudly, and perhaps too often. Figuring out disciplining, not knowing what is behavioral and what is my son's frustration or disabilty or possible seizure...and how to react to it is one of the hardest struggles I have had to face to date.

Potty Training~ The Nightmare continues....

On this journey we are all taking wth trying to raise a child with special needs, we will encounter so many obstacles. Tests, trials, call it what you may, but it is so hard. Potty training a typically developing child is difficult. Training a special needs child can seem like it is going to break your spirit. At least it has tried to now for almost 3 years. My son turned 7 this past April. He does not use a walker and is capable of getting to the toilet. He has severe brain damage from a neglegent hospital staff that delivered him. It is a miracle he is even walking. Around the age of 2 maybe, I was told by one therapist to not even try until he was at least 5. He absolutely refused to stand in front of the toilet to even attempt to pee. Really traumatized him. Trying to sit him on the toilet was just as bad. We installed those bars on the wall so he could hold onto something forthe extra sense of support. That has helped. We have had many instances in the past 3 years of some success. For us, the steps were very small. Getting used to the toilet, the sound water makes when urine hits it, modifying the toilet seat so he would know he wasn't going to fall in. It was a sensory issue with him for many years. It was difficult figuring out all of the different triggers he had when going into a bathroom. When he was about 4, he was pee trained for the most part. You couldn't ask him if he needed to go to the bathroom, you couldn't even tell him to go. You had to pick him up and carry him to the toilet, assist him with his pants and tell him to "make bubbles". He would comply. Around the same time, he was diagnosed with Epilepsy and when the medicine reached a certain dose, it gave him chronic and explosive diarrhea. There were other outside stress factors going on at the time, we were not convinced it was the medicine giving him the diarrhea for many months. Beacuse of sanitary issues at his preschool and Kindergarten, they asked to keep him in pullups. He would use the pull ups as a diaper. We had enough with the diarrhea, we had changed everything in his dailly life that could have caused the diarrhea and decided as a last result to change the seizure medicine. The new seizure medicine has the opposite problem. Constipation. Now, my son is pee trained and with the help of Miralax, are trying a regimine for poop training. He has been in underroos now for about 3 weeks. A couple of accidents. Since the age of 4, I have had multiple specialists "help" with potty training. I tried every program out there. I would go in fits and spurts. Iwould have him in underoos for 3 or 4 weeks (on weekends and during school vacations) at a time with absolutely no success. I was so sick of poopy pants to clean or throw out. It was trying in every sense of the word. Itwas exhausting. I was always told 'if you do this and are consistent, he will be trained". I felt like a failure. It was so disheartening. Finally,after 2 years of this, the Neurologist said "kids with CP usually have no problems potty training if they can get to the toilet. so, in my opinion, he has autism." That is another post. I was referred to a specialist that worked with Autistic children and potty training. I had already done that 2 years prior, and tried those methods again. No success. Rewards didn't work. Routine did work. Last spring, he would go after lunch in the clinic atschool. Summer came and he reverted back to his old ways. I went to the school clinic and tried to make the bathroom downstairs outfitted just like the one at school. No success.Finally, a gastrointestinal specialist evaluated him. In our situation things were as follows (stop reading if this doesn't affect you as it is a bit graphic). His constipation had stretched his bowels. When they are stretched, the sensation it has when full is altered. Kids don't get the same sensation they usually get when they need to go. The doctor also said that with the evaluation the way it is, the stimulation of certain nerve endings would trigger the body to expel excrement that was in the bowels. My son did not. SO, she said that some kids with CP have difficulty poop training because the brain is not sending the right signals to that part of the body. When I saw the Neuro after that visit and explained what the Gastro said, he just replied "oh yes, kids with CP sometimes have difficulties with that." GEEZ, can the doctors drive me any crazier than I already am???

Back handed compliments really aren't bad all the time

I have read SO many posts on the subject of "other people's reactions" to our kids and their exceptionalities. I think that MOST people are inherently good, and aren't purposely setting out to anger us when they say" but he looks so normal" in response to learning our kids have special needs. That is a compliment. Take it as such. When someone says that to me I want to scream Hallelujah from the roof tops. I respond to anyone who makes that comment "Thank you so much, that is the nicest thing someone has said to me all day." If that person isparticularly chatty, I may even say something like "we had a difficult childbirth and it is a miracle either one of us is still alive. In fact, 30years ago we would have died in childbirth. He has severe brain damage and he shouldn't even be walking, so the fact that a complete stranger looks at him and thinks he is doing so well that he looks "normal" really gives me a little boost to make it thru another day, week, month." Now, that complete stranger that had absolutely NO experience with a disabled child has alot more sympathy and compassion for everything we do. If my son looked syndromy, then nobody would even try to converse. Most people are terrified of obviously disabled people, especially children. It is so far out of their comfort zones. So what if my son doesn't meet developmental milestones in a timely manner. Big deal. At least when he is older, he will be able to live a relatively normal life, not be judged byhis looks and have a much better chance of being accepted by mainstreamed kids, hopefully.

Visuo Spatial Processing Disorder in real life

The parent that has a child diagnosed with CPor Encephalopathy that does not ever have issues with some sort of Learning disability is Rare and Lucky. My son is only 6 and I feel as tho I could sit for any state licensing board for Exceptional Student Ed and Pass with flying colors without having taken one class. One of many things we deal with include visual processing difficulties. My son has difficulty "integrating multiple fields of vision". One simple test the Neurologist did in office that completely showed the problem was as follows. Neurologist took his finger and asked David to follow it with his eyes. He made one large sweeping circular movement. When he was outlining the top half of the circle (abovethe midline of visual fields) my son followed his finger, and as soon as the doctor's hand went below the midline into the lower field of vision David noticeably stopped following the finger. It was as if the hand just magically disappeared. Out of sight out of mind. He has all fields ofvision, but connecting them together is difficult. He too, will trip over large objects and stumble down any uneven patch of ground or small curb or step. For instance, if I left the vacuum out, he would walk towards it, reach out for the handle so he wouldn't bump into it and fall down, only to fall right over the base of the motor on the vacuum. He doesn't appear to see from midline down, so he has learned to compensate. He does so much better navigating his environment, but he needs to be constantly aware. We had to and continually have to say "look down, there is a small step". Heused to be deathly afraid of walking from surface to surface, even the ones that were the same level like a floor that had a tile pattern on it. He has learned to recognize the bright yellow strip of paint on walkways that indicate a step down and can even walk down a small step while standing. Before, he would sit down, turn over and go down even the smallest step backwards on his hands and knees. Standard sized stairs he still needs to hold on to the railing or an adults hand when going up or down. It is coming to light how much this effects his success in school. He also has epilepsy and spikes in his temporal lobe. Seizure activity there seems to wreak havoc on his visual processing at times(and cause Hallucinations as weare now aware). He will flip numbers. For instance he will say a number,(14) then go to write the number but writes it (41) yet sees it as 14. When you try to correct him, he just states "14, that is what I wrote". Most of the time, he gets his numbers right, and it is only periodically he flips them. It is now coming to light, there seems to be a correlation between temporal lobe seizures just prior to these visual disturbances at least with writing numbers. He is so young, and has significant expressive language delays so it is difficult to really get a firm grasp on the complexity of the issue. Only time and alot of guesswork will yield the answer. He has learned how to copy certain patterns(in 1 dimension), but still has difficulty if trying to copy a pattern that is 3 D. For instance, a psychological test commonly used has red and white blocks with varying patterns on each side. All white, all red, half white and red either to make 2 rectangles or two triangles on each side. When trying to copy a patternwhen there are distractions (like the side of the block interfering with his processing the correct visual image) he has great difficulty. Hard to explain, I could draw it out but not on this blog. I have noticed that figuring out what is going on in terms of learning differences seems to be getting easier. I remember just a year ago pulling my hair out because my son had difficulty copying a pattern more than 3 objects at a time. I remember wanting Valium or a strong Martini at the end of the day during the period of time David was learning how to walk and ALL the issues accompanying that like I mentioned above (refusing to walk on a patterned or painted floor, refusing to walk thru a door threshold, constantly tripping and falling etc. I didn't get it and just thought at times he was being bratty or tantruming like an obnoxious toddler. I questinoed my own parenting ability because there were times I thought the entire cosmos was against me. I am not intimating that I get it now, but it is MUCH easier to figure out. Things are really starting to come together toform a clearer picture of what is going on with his mind. But that will change over time, and a newer picture will be painted as he gets older. Butthe longer you have experiencing this the better you will get at handling itall. I hope this makes sense to some of you.

My thoughts on an article about the trials of parenting a child with Mild Cerebral Palsy

http://www.childrensdisabilities.info/cerebral_palsy/mildcp.html#Milner
It is a nice article regarding both the trials and tribulations of children with mild CP. In the name of being completely honest, I have to admit thinking at the end of the article "If only I were that lucky to have such problems!" While my son is able to walk, (walk fast in an attempt to run)he can use a fork (prefers to use hands and can't close his mouth at all in the chewing process, but that might just be genetics) I consider myself and my son unbelieveably lucky. At least today I do, don't know what tomorrow brings. If anyone wants diagnoses, I can name a few...C.P., HIE, Epilepsy, Autism, Coordination Disorder, Visual ProcessingDisorder, Low tone, Phonetic Processing Disorder, Aphasia, Verbal and OralMotor Apraxia, Sensory Integration Disorder, hummm.... I am sure I can comeup with more if you give me a minute. Yet, today I consider myself fortunate because my son only had one temporal lobe seizure lasting less than 5 minutes of visual hallucinations according to his teacher. I am not angry with the mom that complains her child has difficulty brushing her long hair. I just think "then why the heck don't you cut it??" Then I think back to a conversation I had with a very dear friend of mine from HighSchool. The moral of the story sums it up. This friend was a "trust fund" kid and came from a fortune 400 family. At the age of 25, this guy was to inherit at least 25 million US dollars back in the early 90's when that was a HUGE amount of money before all the dot commers and Bill Gates Kadrilliondollar fortune. He complained at length about his slightly older brother(maybe 20 at the time) went out and purchased a car he had planned on buyingupon his 18th birthday when he was to come into a couple of million dollars. I still remember it, a Lotus Esprit Turbo. I was completely unable to relate to such "problems". While I was fortunate enough to never want for anything, the word trust and fund were never used in congunction with each other in my house either was the word inheritance except when referring to the hand me down clothes that are apart of all normal families. At the time, my dear friend said in his defense "Just because you can't relate specifically to my problems doesn't mean they don't affect me. Betrayal and hurt by any othername is still betrayal and hurt. We all have our own set of problems regardless of financial independence..etc etc etc." So, on that note, I am sorry this particular author feels such angst and worry. I too feel those feelings. Yet in an obscure way,this particular article makes me take note of what I do have...My son walks, he can eat, he is not reliant on a respirator, feeding tube, wheelchair etc. I don't worry about "if he will have difficulties in the future." I know he will. I just try to live my day today making sure I give him the love and affection and support he needs to make him able to develop enough self esteem and confidence that these trials he WILL endure won't overwhelm him. Hey, that is my feeling today, can't sayI will be so optimistic tomorrow. Let's see how many halluninatory seizures he has, how many complete outbursts he has, how many poopy diapers I have tochange etc.. I am only human too, as we all are.

This life we lead

I have been meaning to write a blog for awhile now, maybe a year. Ican't remember. I can hardly remember what I had for breakfast. Sometimes I try to start one, sometimes I feel as tho I could share myexperiences and maybe help someone out there feel as tho the world isn't falling in on them, that there is someone else out there that gets it. One of the most "engaging" topics in the news has been this Botox treatment off label. I am very fortunate that not one doctor ever felt that those injections would benefit my son. I can't understand why celebreties and socialites and just rich women inject botchulism into their bloodstreams for the sake of eradicating lines. I am grateful I am not a starlet that needs to look perfect for my livelihood. I can't imagine having to make the decision to do botox treatments for my child. I am not judging anyone that has done it because I am giving my son stimulants in order to get his good brain cells to work totheir greatest capacity. Much like we adults infuse our bodies with caffeine and other things we know aren't good for us just to function at our best ability. I am scared about the long term effects of the medication. I am scared about the long term effects of the Keppra(anticonvulsants) he is on. We do our best as parents to do what we feel will help our kids live to their fullest potential. There is substantial "off label" use of botox for kids with severe spasticity. I truly hope that pharmaceutical companies are looking into alternative treatments and can do the necessary research needed to ensure therapeutic and SAFE practices and standards. I had to laugh recently, but then started seriously thinking about what my son's primary care physician said offhandedly to me just last week. She said "you should really write a book about all this". My son was 7 in April. He has currently and by history Cerebral Palsy, Epilepsy, Autism, Sensory Processing Disorder, Auditory Processing Disorder, Visual Processing Disorder, Coordination Disorder, Apraxia, Dispraxia, Low tone (That isn 't a diagnosis is it?) He has a phonological processing disorder, Attention Deficit Disorder(Inattentive type) Impulse Control issues, and the list can go on and on. The skinny on it is that the area of the brain leading to the hypothalamus is severely damaged and that is the gateway of all your sensory processing. Sight, sound, touch, smell, taste are all affected. But he doesn't speak well so he can't explain much. The thing is that he walks, and can self feed. By all accounts, his MRI is consistent with someone in a wheelchair, feeding tube, respirator~Profoundly physically and mentally disabled. His Neurologist calls him "Neurologically Devastated". He can sight read. He is not on a respirator, feeding tube, or in a wheelchair. He doesn't even need a walker. He actually "looks" normal upon first sight. What I have come to realize, no matter what we all go thru, to what degree we have to experience this... IT IS HARD for everyone. We all face many challenges every day that most people won't experience in a lifetime. We all have our coping mechanisms whether it is with religion, a sense of responsibility, a "calling" , whatever. On the particularlyhard days, my mechanisms include a nice bottle of Pinot Grigio, shameless watching of General Hospital on DVR(maybe even twice) and even a good cry. My husband bought me a pair of wireless headphones for my birthday. They plug into our TV receiver and I can completelytune out the chaos surrounding me. It is a beautiful thing. I have pity parties, get mad at the world, take things out on every one in my immediate family. I am human. We are all human. We will make it thru this. A better person, a stronger person? I don't know the answer to that. Maybe, maybe not. We all change. We don't experience life the way our friends do.(At least the ones we knew before disability) We don't sweat the small stuff, don't fret in the typical crap that consume most of our friends. Life has taught me that ther eare more important things in life. So, I suppose this experience has made me a tad wiser, more compassionate for ALL others with exceptionalities, yet a tad more jaded. But that comes with the territory I suppose.

Music can be so prolific ~ an ode to Rob Thomas and Matchbox 20

Music can be so prolific
This is a lengthy post, .....It seems as if time is so fluid, at least these last years after my son was born. I can hardly use that as the all excuse explanation as he is now 7. But, I do remember either this past New Years or last New Years having a cryfest. After my son was born, we knew there were going to be long term difficulties and we sat down and discussed our options. As I only had amasters degree to pay back in student loans and he had 2 law degrees to payback, we decided he had a better chance of making the income needed to make the loan payments. Low and behold, I stayed home and he went back to work. Did I dream of staying home with my children and fostering their development???NO. NO. NO. Isn't that what Nannies do? At least most of our friends have nannies that do that. Well paid nannies might I add. Anyway, my husband has a wonderful outlet during most of his waking hours. He gets tohave intellectually challenging discussions about all sorts of topics. He gets to eat in the best restaurants in town for client development, he gets to go to interesting seminars, meet innovative people etc. I get the priviledge of escorting my child to various therapies, specialists, evaluations, tutors, etc. Am I complaining, well not exactly. I am grateful for having a family that is intact. Did I envision this life, NO. Do I feel as tho I am a single mom with a roomate that shares childcarer esponsibilities a couple of hours a week? YES. We have a typicallydeveloping child and a special needs child. Because I have absolutely no desire to see Speed Racer, and other mundane, mindnumbing movies and such, I do let my husband experience those typical experiences with our other son. I think I can count on one hand the times my husband has taken our special needs child out on an excursion by himself without the other son. It just doesn't happen very often. I certainly wish things were different. But if I forced the issue, I know that when they came back, the reprucussions would last days. Oh, and did I mention I would be the one to deal with those 'reprocussions?' Sometimes, most of the time, it is just easier to bite the bullet and acquiesce. My life won't be the life of the typical soccer mom that cheers her child obliviously from the sidelines hoping for that perfect goal. Iwon't be that obnoxious mom who talks about her child knowing their multiplication tables by the time they were 6, knowing 3 languages by the time they entered 1st grade. But that is the life I lead. Back to my cryfest on New Years Eve. I happened to google a girl I was best friends with in middle school. We went to different High Schools and by college had lost touch. Much to my pride as well as my dismay, I discovered my dear friend became a world class photographer with websites (plural)dedicated to praising her multiple works and world class awards. Her works were in things like Newsweek, Time, US Worlds News and Report, Natinoal Geographic. In her field, she had won the equivalent to an Oscar, Emmy, Tonyetc. multiple times. Needless to say, I felt, well you can imagine what Ifelt. As our friendship rekindled, I was in awe of her accomplishments, yet she was envious of me. OF ME???? Certainly, she was mistaken. As it turns out, we all make sacrifices....They are just different, but we all envy ther ewards the other achieves. Isn't that ironic? the grass is always greener on the other side....My dear hubbie bought me a new IPOD for Christmas as I happened to wash my old one in the laundry one day. He is content to let it play what it wants, when it wants so he was willing to take the washed one. Before he had a chance to clear out my entries and add his own music, he had a chance to listen to my songs. He came home on New Years Eve and proclaimed......"I know why you are so damned depressed all the time..." He continued to tell me "the music on your ipod makes me want to slit my wrists, drown my sorrows in tequila, wish my mom died, want to kill myself and jump off a cliff kind of music." Didn't think Sarah McLaughlin, Coldplay etc was that moody. Anyway, I have purpopsely tried to steer clear from those entries until today. I remembered a song that was recorded by Rob Thomas or Matchbox 20. It was my anthem, and still is but to a MUCH lesser degree. The adage is true, time does heal wounds. Anyway, the song as I interpreted it was Rob Thomas singing about someone else (I interpretted it as me singing to my former self). He uses I and You as main characters of this song. When Ithink of it, I think of I as me now, and You as my former self pre kids. Here are the lyrics. Maybe some of you can relate. Maybe you can havecomfort from the words too.

http://www.youtube.com/watch?v=UhthMXtz4Sc
Something is wrong with the sum of us
That I can't seem to erase
How can I be the only one
Without a smile on my face
Well now, you're laughing out loud
At just the thought of being alive
And I was wondering
Could I just be you tonight
You show your pain like it really hurts
And I can't even start to feel mine
Well, I'm standing in place
With my head first and I shake, I shake
I see your progress stretchedout for miles and miles
You're laughing out loud
At just the thought of being alive, yeah
And I was wondering
Could I just be you tonight
Is is the sound that I make
These are the words I chose
Somehow the right thing to say
Just won't come out
Just won't come out
And you're laughing out loud
At the thought of being alive
And I was wondering
Could I just be you tonight

Who would have thought Rob Thomas would have had such a pulse on what Iwas going thru.

Thru the eyes of a Great Grandmothers wisdom

The burden we carry, the parents of children with special needs thru the eyes of wisdom.

After my son was born, maybe a few months, my grandma made the comment of "How sorry she was that I was going to have to shoulder this burden and go thru this life, and she knew she didn't have the strength it was going to take for me to get thru it." I could tell she was really saddened by it. At the time, I was in a great deal of denial about what the future was going to bring, and that my son would beat the odds and not have any long term problems. My grandmother survived 2 husbands, 3 CRAZY sisters, crazier, meaner mother in law, the death of 3 of her 4 sons before they were 30, and the death of her oldest grandson (my brother) at age 18. She had one heck of a traumatic life surrounded by premature death. Rose Kennedy had nothing on my grandmother. So, when she said what she did I was incredulous. "But Grandma, you are here having buried so many loved ones, those are incredible tragedies that cause inconceiveable grief and yet you are so grounded, loving and forgiving yet tell me you don't have the strength to go thru what I will have to? How can you say that???" She said, and I will remember this always because now I GET IT...."With each death, there is a definite mourning period and process. It is excruciating at first, then as the days, months years pass, you heal. You can get thru birthdays, holidays, major accomplishments like graduations, anniversaires etc. at some point without being consummed by the memory of the lost loved one. You remember the loved ones, but you get to a point where your day isn't consumed by the grief and thoughts of days of past." Then she went on to say (not in a mean ordemeaning or patronizing way but one of love and concern) "you are going to be dealing with this everyday for the rest of your life." In effect, my mourning process will never end. I will have days, or weeks of happiness over accomplishments of my son, but will intermittently be hit with periods of mourning the perfect child. The If only .....moments." I am tearing up now as I wish my son could join a little league baseball team with his typically developing brother, learn to ride a bike (that may still happen, who knows) etc. I shared that because I wanted to reiterate the process of mourning. People have to do it, we all do it in different ways, at different paces with different outcomes. Dads that work outside of the home get a reprieve from the daily grind which can in turn delay the process of going thru all the grieving stages. This causes major rifts in marital life which is the reason the divorce rate for marriages that have special needs children is astronomical. Last I heard, it hovered around 90%. Grandparents usually don't get to see the day to daystruggles of our kids, quite often we live on seperate sides of towns, the state or the continent. They have mourning to do over their grandchild. There are 5 stages of grief, Denial is one of the first stages. It comes in all kinds of UGLY shapes and sizes in the forms of pervasive personality traits. Denial is usually one of the first stages we go thru after shock or in conjunction with. I know this first hand. There were many times in the early years, I would rejoice when a grandparent would finally see what it was we were talking about. I viewed them as small"victories" I suppose. Not in a keeping the score type of way, not in Point for ME, but in Point for them because they were finally progressing in the process of mourning and grief. That is the moral of my rant.

Today is a gift that is why they call it The Present

It will take just 37 seconds to read this and change your thinking. Two men, both seriously ill, occupied the same hospital room.One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs.His bed was next to the room's only window. The other man had to spend all his time flat on his back.The men talked for hours on end.They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation. Every afternoon, when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window.The man in t he other bed began to live for those one hour periods where his world would be broadened and enlivened by all the activity and color of the world outside. The window overlooked a park with a lovely lake.Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color and a fine view of the city skyline could be seen in the distance. As the man by the window described all this in exquisite details, the man on the other side of the room would close his eyes and imagine this picturesque scene.One warm afternoon, the man by the window described a parade passing by. Although the other man could not hear the band, he could see it in his mind s eye as the gentleman by the window portrayed it with descriptive words. Days, weeks and months passed.One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep.She was saddened and called the hospital attendants to take the body away.As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone. Slowly, painfully, he propped himself up on one elbow to take his first look at the real world outside.He strained to slowly t urn to look out the window beside the bed.It faced a blank wall.The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall.She said, 'Perhaps he just wanted to encourage you.' Epilogue: There is tremendous happiness in making others happy, despite our own situations.Shared grief is half the sorrow, but happiness when shared, is doubled. If you want to feel rich, just count all the things you have that money can't buy. 'Today is a gift, that is why it is called The Present’The origin of this letter is unknown, but the message is very powerful.

Saturday, May 10, 2008

My thoughts on the Erma Bombeck Poem

There are so many points this Erma Bombeck has nailed, at least where itconcerns me and my experience thru this whole thing. It is funny because the only father figure I have ever known is my step dadand he was PhD level trained minister. Super smart, could always accuratelyquote any scripture in the bible without reference with uncanny accuracy. Needless to say, religion was a major influence in my life growing up. My real father died of cancer when I was 2 weeks old, so I never knew of anyoneelse as a father. Anyway, life, and academia get in the way of religious pursuits. Aftertaking collegiate religion courses, I became very agnostic for a period of time. Yes, paradoxical but true. After my son was born, hearing countlesspeople make comments like "God only gives you what you can handle, he must think you are one special person etc..." I HATE when people say those thingsto me. I know they are well meaning, but it sounds so trite, meaningless and some what patronizing. Then I realize that is really social conditioning to be polite and try to bolster others in such seemingly horrific conditions. What could they really say "WOW, that SUX, I am SO GLAD it is NOT me this happened to, and I am so glad my child is being tested now for gifted etc."Of course they can't say that, but you know that is what most people are really thinking and feeling. That is natural. It is the same way I feel when I see a child suffering from cancer, or a child that is more medically fragile and involved than my son. Except for being tested for gifted (that is a pipe dream) I just interject that part with "thank god my son is walking."I believe very strongly that God did not choose me for this life ~ the life of mothering a special needs child. How could I possibly believe that? I was taught that our God is a loving, forgiving God etc. The thought that God would purposefully inflict this level of burden, heartache, responsibility on me is incomprehensible to everything I was taught about my God, the JudeoChristian God. Most of the traits Erma writes about most certainly describe me tho. I just don't believe that God chose me because I had those traits. I used to be so Happy, now I can find moments in any given day that can be construed as happy moments. But I am not the happy person I used to be. I don't know if I am unhappy per se, because I am so tired, drained, sleep deprived, stressed. I can say that I am not able to really fully access that level of happiness I had prior to having children. I still have an incredible sense of humor, but it doesn't show itself so much anymore. Patience is not one of my virtues. I am independent and don't care one iota what people think aboutme (sense of self I suppose). There are times nowadays that I am not evensure I believe anything I was taught as a child with regards to religion and I do have traits of selfishness. But those last 2 things really reared their ugly heads after years of doctors, therapists, physical bruises inflicted on me after a particularly bad seizure or tantrum of my son who is up to my shoulders now and he is only 7. After years of completely isolating myself and family for fear of going anywhere because my son would flip out for no apparent reason. Going to the grocery store usually occured after 2 am and before 4 am because my son didn't sleep thru the night until he was 6 and couldn't fall back asleep without me. It goes on and on. You know, most of you are there too. I do believe that God, at least the one I was brought up believing in, periodically interjects (intervenes) and puts comforting thoughts or feelings into my head or heart. Even gives me a different perspective at times. I believe he has allowed me to access parts of myself that appreciates things that most people regard as mundane, trivial or elementary. Just the other day, my son's tutor said "David made progress with language today." It happened 2 or 3 times before she could definitelymake out what he was saying, but it was definitley in context. Apparently,when my son would make an error on his homework, he would mutter "da_n it". Not darn, by the way. Typically, I wouldn't be thrilled my 7 year old was using profanity, but I was because he was spontaneously using words to describe frustration. As opposed to his usual throwing shoes across theroom, rolling around on floor and kicking the walls and screaming etc. So, Iwas thrilled at progress. That is just one example of God allowing me to see things in a different light. Progress is progress -now. The littlest accomplishment is noticed by me. The resentment part. That I still struggle with at times. That usually seems alot worse if I am really tired. So does depression, self pity and all of those other horrible emotions we all feel. I am grateful tho because myhusband usually can recognize when I am starting down that spiral of self defeating behaviors and just says. Go to bed, stay in bed and SLEEP. And make sure you take one of your sleeping pills so you don't wake up 39 times tonight. There is alot to be said about that old adage "aint nobody happy if momma aint happy."
The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children.Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation.As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used toprofanity."Finally he passes a name to an angel and smiles. "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows nolaughter?That would be cruel.""But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea ofself-pity and despair.Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in amother.You see, the child I'm going to give her has a world of it's own.She has to make it live in her world, and that's not going to be easy.""But Lord, I don't think she even believes in you."God smiles. "No matter, I can fix that. This one is perfect. She has just enoughselfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she willnever survive.Yes, here is a woman whom I will bless with a child less than perfect.She doesn't know it yet, but she is to be envied.She will never take for granted a spoken word.She will never consider a step ordinary.When her child says momma for the first time, she will be witness to a miracleand know it.I will permit her to see clearly the things I see--ignorance, cruelty,prejudice--and allow her to rise above them.She will never be alone.I will be at her side every minute of every day of her lifeBecause she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air.God smiles."A mirror will suffice."