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.