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Up until now I have always kept a handwritten journal. This will be the beginning of my online journal. Here I will write about our current issues and circumstances in relation to Kabuki syndrome.This will also be a place to express joy and triumph.
Though it is not always easy to put into practice, I try to remember that in life, pain and suffering are inevitable...but misery is optional.
June 15th , 2009
I have been remise in keeping up my journal but life has a way of getting in the way. Joshua is now 8 as of last March and many changes have occured. He has regressed in toileting and now has occasioan day time accidents and wets the bed every single night.I am soooo sick of laundry.lol he is randomly dry at night may be once or twice every few weeks.he now also suffers form chronich head aches..some that that seem to be migrains. We think they are due to anxiety issues( stress induced) but we are also considering seizures and persuing an MRI and haivng his heart checked with an echo yet again to be sure they are not the culprit.
Joshua has had some triumphs too. he is now reading small words..sounding out the sounds to form words. he is still along way form his peer's reading level and still needs soem prompting..but the beggining of reading are now there..WOO HOO!
My biggest challenge right now is fundraising to the tune of $18000 to get Joshua an autism service dog. This is a daunting task to say the least. Fundraising takes on a life of its own and is all consuming. It is taking me away from other important things I need to take care of but it is important that I finish what I started with this project. This dog will improve Joshua's quality of life as well as ours.It will offer him safety, independence and companionship. We are hoping the dog will help Joshua control anxiety and help with sleep issues as well.I have heard that this has been the case for other kids like Joshua who have gotten a service dog.
We have raised to date $7000 toward our goal. Only $11000.00 to go...chuckle at the word ONLY.lol ...I am finding that there is a fine line between fundraising and begging but what parent would not beg for their child when there was a true need that could not be met by any other means.Raising a child like Joshua really opens your eyes to who your real support system is too.There have been so many in our lives that have said "hey..if you ever need anything, let me know". Well, I have come to realize that is usually ( but not always) the equivalent to the gratuitous question of " how are you?" when people really only want to hear the typical" I am fine" response instead of whats really going on in your life. Oh..I don't mean to be all negative..we have some truly wonderful people in our lives and for them we are so thankful. I suppose its largely the issue that most people just can not possibly understand what managing the care and needs and emotional health of a special needs child while maintaining your own sanity is like because they have not gone through it. Its not their fault..just a fact.
I look forward to reachign our findraising goal so that I can resume normal life( once again I chuckle) I forgot what NORMAL was a long time ago. It no longer exists. I guess I meant normal for us.
February 5th 2008
My my my , how time flies. I can't believe Joshua will be 7 next month. he still seems very small and young when I look at him that I sometimes forget just how old he is.he is currently in grade one. It is a regular curriculum but he has an IEP modified to his needs. The clas he is in is a smaller speach language and comunication class geared to kids like him who have speach and language delays and issues. The focuss is on teaching these kids to speak more clearly and to tlear to read. Joshua is making progress but is still have a lot of difficulty in the area of reading. he still does not recognize much of his alphabet. He can read his name by memory as well as a few other words.Right now we are faced with the decision of what to do for him next year. We can keep him in a regualr main stream class or put him in a special class for learning dissabled kids. We are stumped as to what is best. there are pros and cons to both scenarios. if we keeps him mains stream he might struggle a lot if he just can not keep up. he will also be going to a new school where no one knows him yet so there is the issue of him being so different form his grade 2 peers and not being accepted. But on the other hand...he will be ofered a typical education.I am afraid to pigeoon hole him so young and limit his education by placing him in a special class. Also.. the kids in the special classes often have behaviours that Joshua could mimick.
The otherside to consider is that Joshua just might need to be in that special class where he can learn at his own pace. he may have less pressure and stress in a special class and relate beter to his peers. It is such a tough decision.We are really stumped on this decision. We wanr Joshua to grow up feeling as "normal"( for lack of a better word) as possible. We want him to have all the opportunities any other child might have in his education. We are praying for wisdom and guidance in this decision.
September 1st 2007
It has been a while since my last entry here but we have been busy.Joshua is now on a regular regimen of ADHD and OCD meds as well as some for sleep disorder.It took some tweeking but we think we have the right med routine for him now
Also, Joshua recently had surgery (otoplasty)done last Monday on August 27th. basically, we had his ears pinned.he is still all bandaged up and looks like he is wearing a gauze football helmet. I will upload pictires soon. I am anxious to see the resulta when the bandages come off on Septemeber 5th. Joshua was to start grade on this Tuesday August 4th but we will be keeping him home until the bandages come off.We are still workign out the situation with his E.A. alotment with the shcool board.Joshua needs constant supervison in the class room so the thought of him not having an E.A with him at all times makes me very nervous. I will postmore on this later as I get more info.
August 9th, 2007
It has been a while since my last entry but that is because life here has been very busy. The appointments keep coming but there is a light at the end of the tunnel. Both my kids will be going to school full time ( all day every day) Starting in September. ( Does a happy dance!!!!!!) Of course I will miss my kids terribly as I am so used to having them home with me but this will allow me to have some much needed down time. The appointments ( therapies) will switch over to being done through the school system so there will be very few outside appointments accept the occasional follow up assessment and doctor appointment. The days of carting Joshua off to this therapy and that therapy three times a week will be over.( PHEW!) He has had so many appointments that even in pretend play time he is off to see the doctor or therapist.This is what life is to him so this new adventure of being in school all day instead of half days or just every other day will be so good for him. It is taking him one step closer to being a normal kid
( what ever normal really is).
the last month and a half has brought some changes. We embarked on ADHD med trials. Doctor Narsys Punthakee had Joshua try three meds for two weeks each to see which medication was the most effective and with the least side effects. The first one we tried was Respiridol which helped calm Joshua somewhat but the changes were subtle.It did not do much for his OCD( repeating and tendency to be loud) We then moved on to Dexedrine for a two week trial but that only last 4 or 5 days. We knew imediately that this was NOT the med for Joshua. The med had him bouncing off the walls. He was much worse in his behaviours and OCD than before the med. He had interupted and restless sleep patterns. All in all , this medication was terrible and we never want to put Joshua on this medication again. After calling the doctor's office we took Joshua off that medication and started him on Ritalin. This was the drug we always hoped to avoid. We resisted considering this for Joshua for years but came to a dead end with all other options and gave it a try. WOW! What a difference this drug made for Joshua. We saw sesults from the first day. Joshua immediately became more focussed and calmer ( though he did not turn into a zombie which is what we feared) We were and are not looking to turn Joshua into a Stepford child. We know that Joshua is a child and therefore will sometimes come with challenges and behaviours for which creative and proper discipline and parenting will be called for. That is well understood and a given. We are not looking for a quick fix ( parenting in a bottle) for Joshua for issues that are typical childhood behaviour.We in fact have always been against considering using ADHD drugs. We never wanted to go down this road but we came to a point where we realized that by dismissing the idea of using these interventions, we could be keeping Joshua from reaching his full potential. Joshua was in the end showing signs of being so overwhelmed by his surroundings ( noises and visual stimulation) that he just could not focuss and therfore learn what he needed to learn. His OCD traits were increasing to the point where all he did all day was self stimulate by walking around with a piece of paper. He never ever played with toys anymore. He would not be able to sit still for a T.V. program or movie though he was fixated on the idea of tv and movies and beg all day long for them. I am not talking about just a kid who wants what he wants and begs. I mean that he literally could not get himself off the topic of asking or talking about movies ALL - DAY - LONG - NON - STOP. I was ready to pull my hair out and scream from all the repeating! The Ritalin did not completely take aways all behaviours ( nor did we expect it to) but the behaviours quickly became more bareable and manageable and I ( his mom)am able to be more patient with him as a result.
Once the drug trial was completed we visited the doctor again for a follow up to decide what meds and what dosages we would use for Joshua. We decided that we would now try a combination of meds so that Joshua would have balance throughout the day and night. Joshua now takes Ritalin in the morning and again after lunch and then takes Respiridol at dinner time and Clonadine and Melatonin at bed time. the Clonadine and Melatonin is to level him out and help him sleep as the other meds were disturbing his sleep patterns. He was tossing and turning much of the night and therefore being fatigued in the day time. I am journaling his behaviours and any side effects ( so far so good) to be sure this combination is working for him without stiffling the delightful child he is. For those that would criticize these meds and our decision to use them, we have considered and tried all options including behaviour therapy and counselling which we are still currently involved with. We do not take the use of these drugs lightly and would never have opted to use them if we did not feel and know as his parents who are with him 24/7 that he truely needs the help these drugs can offer.For Joshua the benefits far outweigh the risks and we are pleased with the results so far.These drugs have been under such scrutiny by parents including ourselves so my comments here may come across as glib and abrupt. It is my intention here to let family , friends and anyone invloved with Joshua know that we are parenting Joshua responsibly and though we are always open to hear all sides and sugestions for Joshua, we fell we have his best interests at heart. We have made all these choices carefully and with great thought. We know that not everyone will agree with our choice to use these meds for Joshua but we respectfully and lovingly request that you respect our choices and trust that we know what is best for Joshua as his parents. Joshua is so blessed to have so many people( friends and family at the top of that list) that love him and want what is best for him. We are blessed to have such a great support system in all those people. We are thankful for all the love and support offered to us by those very special people in our lives.The value of that love ans support is priceless to us.
So far Joshua is doing well on the new med combination and we are seeing a more3 focussed child emerge. It was like he was trapped in his head and body in may ways and the creative imaginative child is now able to emerge form his shell that we call ADHD/OCD.
June 9th , 2007
Yesterday we took Joshua to see a new doctor to discuss sleep and ADHD issues.. We were very pleased with the results of the visit. The doctor was attentive and willing to listen and she asked all the right questions. We found her to be very thorough. She confirmed our thoughts that Joshua needs some intervention but not neccessarily the most extreme meds right off the bat. Together with the doctor we decided to first try Joshua on Melatonin to help with the sleep issues and see if we can get results that way. Depending on those results we will consider using clonadine to help with the ADHD issues.Joshua is not a bad kid...just a very active and sometimes hyper child that needs a little extra help in able for him to focuss and stay calm.We are hopeful that we are on our way to giving him the right help. It may take time to find the right help but at least there is a light at the end of the tunnel. We have resisted using any meds for Joshua in this area for so long but now feel we have to consider these options so Joshua has the best chances of being able to focuss and learn.His inability to focuss has been keeping him from catching up in our oppinion. He may still not catch up but may at least gain some ground once we get him on the right regimen. That is our hope.
June 2 , 2007
We have encountered a few concerns this week. Earlier this week I was working downstairs while the kids played happily in their rooms. All of a sudden we heard our daughter scream. I ran up to see what was wrong to find her with her fingers jammed in the window after Joshua had slammed the window in his room closed on her hand. I helped her and then was about to talk to Joshua about what he did. When I looked at him I noticed a very large bump on the upper left side of his forehead. It was quite the goose egg. When I asked him what happened, he did not remember having hurt himself.his sister did not have an answer for me either.He has had many bumps and scrapes due to his lack of coordination and poor vison and other issues but he has always been able to tell me exactly what happened...especially with an injury this large. What strikes me as odd is that we did not hear a thud or a cry of any kind from his hitting his head. Goose eggs have never been a serious cause of concern for us in the past but this time I am concerend as it is a week later and this bump is still quite large.It has only shrunk a little in size.The other concern is his inability to remember injuring himself. I have to wonder if he had a seizure while we were not in the room with him for that brief time. We have always been aware that Joshua could be experiencing seizures but no major seizure activity has ever occurred while we were in the room. We have only seen mild seizure like activity...( possible absent seizures and fluttering).Joshua's neurologist told us he can not conclude for sure that Joshua has had seizures but he can not rule them out either.I guess it is time for another trip to the paediatrician to get some answers.
On another note...we receievd the results from the testing ministered by the psychometrist this week and much of what was reported to us was of no surprize. The one diagnosis that I have been dealing with is that Joshua is now considered and reported on paper to be MR. I have always known that he was developementally delayed and that has been an easier pill to swallow as it implied he could catch up, but being even mildly MR ( mentally retarded) implies that Joshua could remain child like for all his days. As a mom I want as normal a life for Joshua as possible.The psychometrist told us that she does not like the use of labels but uses them to help parents get services for their children which makes sense to us.My fear is that now that he is officially labelled as being MR on any level( even mildly) is that the school system will now try to pigeon hole him into special ed classes in the future. I want Joshua to be offered that same level of education as any other child. If it becomes obvious that he just can not keep up, we will accept it but we as his parents feel it is still too soon to assume what Joshua will and won't be capable of academically.Joshua's educational future could depend on how the school system interprets this new report.
May 28 , 2007
Recent weeks have been filled with so much anxiety but also triumph. We recently moved to a new area and though we love the neighbourhood we live in, trips to the park have been very stressful. In our old neighbourhood making friends was easy for my two children. the park was quite large and many kids sofmr all over the neighbourhood came to play. There was always someone for Joshua to play with. The new park is a lot smaller and not as easy for Joshua to navigate safely. the play structure is much different. the kids that come to that park range in age and size and Joshua is having a difficult time relating to the kids there...but not for lack of trying. In school I am told by his teacher that he is beginning to play actively with his peers which is a triumph but n the park the kids don't seem to want to play with him. he will repeatedly approach a group of kids and ask to play but many of them seem to think he is younger due to his size ans speech issues.Even the ones his agearen't as willing to play with himn which has me baffled since we did not have this problem in the other park. Joshua will get right in there face if need be to ask if he can play but still he is frequently ignored as the kids just walk away. It just breaks my heart.I was overjoyed two days ago when we had our usual excursion to the park and there was a family there( mom and three kids) who were not only willing to interact with Joshua as well as my daughter Madison...they were eager to. The kids were around age 7 and 8 I think. I sat with their mnom and talked while the kids all played happily with excitement for each others company. We all became fast friends and so we got together again for a play date the next day. Seeing Joshua struggle for social acceptance hurts my heart but I know this is something he will face throughout his life.Still...knowing that does not make it any less heart wrenching to watch.
Tomorrow we see the psychometrist. We will get the results of his evaluation. Not sure what that will lead to but I will not speculate.Basically she was evaluationg Joshua's learning style etc.
May 10 , 2007
Well, we signed the paper to accept the placement for Joshua in the grade one communications class for next fall.We thought long and hard about it and decided the benefits could be great if we allowed joshua to take part.We are still advocating for him to get all that he needs but it looks like his E.A. alotment will follow him to the new school.
May 8 , 2007
What a morning! We are home after spending most of the day at the hospital where Joshua had 6 cavities filled in the O.R. All went well though his blood sugar dropped a bit.The professionals attending to Joshua were right on top of it as I mentioned to them to watch for hypoglycemia and they gave him some sugar in his I.V. Recover took a long time as Joshua was very groggy and did not want to wake up.Joshua slept almost the whole car ride home ( about 25 minutes long ) accept for the time he woke long enough to dry heave in the car.He is resting comfortably on the couch as I prepare to go out ( or send hubby out) to get ice cream for Joshua to help him keep fluids up. He never wants to drink after surgeries and such procedures.That is always a concern as we usually face constipation the next day. It is 28 degrees outside and beautifully sunny. It is a shame the day was spend in hospital but may be we will spend time outside a little later once Joshua is more awake.I am just thankful to be home instead of at the hospital in an uncomfortable chair.
May 3 , 2007
Today was a day packed with appointments. I am just now settling down after having to go, go, go all day with Joshua. The poor little guy was a trooper through most of it.
It started with an early morning phone call from Joshua's dentist letting us know they had an O.R. cancellation so they could fit Joshua in to have oral surgery done this Tuesday rather than have to wait 6 months for Operating room time.All we are having done for Joshua is having some fillings put in where he has cavities but Joshua is so phobic of the dentist that doing it in the O.R. is the only way to go without traumatizing him.He got through the pre-op appointment well enough and Tuesday will be the actual dental work day.Next it was home for lunch...time for me to get a little work done and then off again to yet another appointment to get moulds made for Joshua's hearing aid and also for custom swim plugs.That did NOT go over so well. Joshua screamed blue murder and was very offended by the whole thing.That was one of the worst tantrums I have seen from him yet. He is very sensitive about having people touch his ears or put anything in them so he was not pleased at all.Next it was off to the speech and language pathologist that works with him for some speech therapy.That was a light session as Joshua had been through a difficult day and was pretty much spent.I was able to get some input from the speech pathologist regarding her thoughts on putting Joshua in this speech and language class for September. She feels Joshua could benefit greatly from it though I still have issues and concernswhich felt were also justified. I have more questions to ask including questions of transportation for Joshua to get to school. I will deal with those questions tomorrow. The kids are both settled in their beds after a long day and I am off to relax.
May 2 ,2007
This week has brought new decisions for us. In September Joshua will be entering his grade 1 year of school. There have been debates over whether he is ready for grade 1 since he does not yet know his alphabet and is much shorter than children his own age. Developementally Joshua is equal to that of his 4 year old sister but Ontario school rules state that since Joshua is 6 years of age, he must enter grade 1 this September 2007 regardless of his academic ability.It took me a long time to resolve myself that Joshua just might be okay in grade 1 since he will have full time Educational Assistant support. Now,just this week, I have received word that Joshua is being offered an opportunity to be a part of a special grade 1 class that will offer him a regular grade one curriculum but will also offer him speech and language services.He would benefit by having a speech and language pathalogist come into the class roon twice a week. the class size is small ( 12 students) so there is a lot of good that could come out of Joshua being a part of this program.The issue that makes it difficult for us to decide to enroll in the program is that there are no guarantees that Joshua wll be given full time E.A. supprt while in this program.There are health and safety issues to consider as well as accademic ones.. I am in the process of advocating for Joshua to be granted the same full time E.A while in the program as he would already have if he continues at his current school but there are yet no answers or guarantees.I want to make the right decission for Joshua and give him every opportunity to excell and learn but not if it compromises hissafety and support.My fear is that if he loses his E.A, not only will he beat risk for health and safety concerns but he may not be granted his full time E.A for his grade 2 year when he will be exp[ected to return to his home school. there is also the issue to consider that joshua has already changed schools twice so he has attended three different schools in 2 years but this new program woudl mean two more school changes for this year and next. That is a lot of moving around for someone like joshua or any child for that matter. Stability and social developement are equally as important as accademic so Joshua;s dad and I have a lot of thinking and advocating to do before we can feel at peace about putting him in the speech program. The program sounds wonderfukl and is a great opportunity but we ave to look at the big picture.I will write more about this situation as I get more information and come closer to a decision.
