Friday, January 14, 2011

my hope for you.

Today I felt the sting once more of facing a lifetime of Dyl and his autism. I love Dylan...just the way he is, but there are times I wish differently for him.

I have decided after months of seeking alternative treatments for him that I am no longer going to do so at this time. I love you Dyl pickels, you are so special to me.

Thursday, October 14, 2010

The meeting with the DAN doctor, a new direction?

It has been nearly 6 months since I first called to schedule an apointment with the doctor we saw today. She is a highly reputable DAN dr, who specializes in pediatrics and was reccomended by my SIL due to her involvement with my newphew. My nephew, who was once Dx as being PDD NOS is now recovered thanks to some of the bio medical treatments Dr Young's prescribes.

I had mega high hopes for this appointment. I caught myself nearly bursting into tears several times today not knowing if she would have some answers to finally help us or not.

Let me just stand back for a moment and stress as well that while I say that, it is also incredibloy important to state that Dylan is actually doing quite well right now. He is excelling in school, getting *drum rool please* STRAIGHT A's, and his behavior while isn't perfect, it has improved tremendously. I credit his psycologist Dr Drewyor's behavioral management skills he has taught me, the meds Dyl is on and Dylan's unwaivering attempts to try and work hard. Dylan is an incredible kid, I couldn't ask for more...and while sometimes I def need a break, I still am overwhelmed at what an amazing kid he is turning out to be.

Today's appt was about the meds. The truth be told, both him and I would love to find a way for him to function without them. Is this possible??? Well after today appt I still don't know that answer, but i am encouraged to say that once again I am in awe of God's timing (you would think by now that I would just learn to always trust,...I'm getting there but not 100% YET ;) )

What I found out was this....after the history was taken, Dr Y came in to talk to us and covered a lot of what the intake nurse did as well as a lot of what I recall her covering when we took Nate (Dylan's next sibling down who has severe ADHD) in to see her.

Basically after all that it came down to this....she cannot help us. The thing that I want, while she knows there are studies and reasearch being done on that specific area (that would be weaning autistic kids off anti psychotics) it just isn't her speciality, but she is looking into going down that road as well. So in that case it just so happens (enter God's timing here) that not 3 days ago she met with another local DAN doctor who specilizes in such things, AND he is currently looking into more of the autism side of this. What I mean by that is that it turns out that this doctor actuallyo started doing his reserch and treatment on adults, specifically adults who suffered from neurological components that require ...you guessed it , anti psychotics, or even in general things such as chronic fatigue, depression and even fibromyalgia (did I spell that right mom? :) )

This is highly intriguing, because just in the last several weeks my Mom who has been Dx at one point in time or another with all of the above, said that there had been evidence discovered recently that autism could be somewhat linked to what she has (again all of the above).

The long story short is, this doctor is using nutritiaonl supplements of some kind to find answers, and Dr Y said from what he said he is seeing great results.

So, with that said, I guess it goes without saying, we are going to see him. She also reccomended a book called

"The Mood Cure"


So far I haven't read it, only because I don't have my greedy little hands on a copy (yet!!) but I will very, very soon.

The Irony of ALLLL of this too is something that I have yet to discuss or mention here, possibly because of time and because i am quite new to this company myself. But I have been thinking for quite some time that some of what I see in myself, my son....and many others I know that suffer *ailments* of various sorts if you will are all technically related to one thing. In a word....diet.

I would lvoe to devulge more on this topic, especially since as I mentioned Dean (Sr.!) and I recently started selling products via a nutritional company that I believe could possibly help Dylan because they carry high B vit's, as well as ammino acids. If you look on the link above for the book you'll see that sort of thing mentioned so I am even more curious to read that now.

In a sense...looking back I can totally see how this could easily be a nutrional issue. While I still think that immunizations play a part as well, I have not for a long time thought it was the sole factor, as it seems others have not either.

But that will have to wait for another day as I am exhausted after today and I have a 4:45am wake up call to goo run with my friends!! :)

I have pictures of Dyl running cross country to share soon, hopefully next week, the last few weeks have been crazy getting ready for my husband to work 2 straight months, and after this weekend (my cousins getting married) things should slow down some...well as much as they can for a family of 10 :)

Wednesday, June 30, 2010

School, medication and long term plans...

This last school year ended on a good note, I was able to call an emergency IEP meeting and asked for the professionals at the MS that would be dealing with Dyl be there as well (counselor, principal, etc). There were approx 9 people in total at this meeting not including myself, I was very pleased to see that Dylan's education was being taken so seriously.

I admit, I have not always been fair about our local public school system. There have been times in the last few years out of my frustration that I have said things about the quality of the system here that really were not fair, at least in terms of the actual people who do the work (teachers, other school professionals etc). I really think now looking back and truly believe that in a way I wasn't being fair in a lot of ways, however I think I see the bigger picture now. That meeting in my mind was evidence that the schools DO care...the problem that remains however is that despite all of the effort by myself and essentially the school of which he is/will attend, unless Dylan gets some real tangible social training in an intensive environment....all of our hard work will only amount to so much.

I use the example of a friend who is very dear to me and also has a son with Aspergers. Her son recently graduated. Upon his graduation he was so thankful to be done he didn't want to walk to get his diploma. Knowing this kid (he's a really neat kid btw!) and knowing his parents who are wonderful people who have tried really hard to help their son through his school years , while part of me laughed at his *ready to resign* mindset, part of me also grieved the situation as well. Not because his parents hadn't done their best, but because I feel that the system could have done so much MORE for this kid. He is incredibly intelligent, nearly genius in some areas. His biggest obstacle at times can be the rigidity that Aspie's tend to have. Dylan too has this of course and this is precisely why trained individuals need to be involved here. There have been more than one occasion of personal Aide's working with Dyl, who while well meaning and supportive, lost interest and even became bitter and slightly hostile toward him because of the ongoing behavior. This poses a huge problem because Asperger's cannot be cured...we can lay down plans, rules and even circumstances to help them succeed but there will still be hard times, rough days and major set backs, not to mention meltdowns on any given day with no warning.

The problems arise when people who are not trained to deal with kids like Dyl and my friends son are in charge of the situations. As a mom to an aspie I can tell you, you get your moneys worth everytime a meltdown occurs. There are times where I think i've got him calmed and he still pulls out a new and exciting twist lol. So my thinking is that the people whoa re responsible for his schooling and daily learning ought to be fully and specifically trained in all things Autistic spectrum, no exceptions.

The problem with this of course is as of today in Monroe County MI, no such thing exsists. In my mind this is nothing short of tragic because I see kids like my friends son who has so much to give and it pains me for Dyl and his future. I would love to think that my son is capable of going onto college once he graduates, and that he could somehow channel that drive he has LOL and that brain power into something positive that would help him give back. Ultimately that is my goal for him ad for other kids like him in the area we live in.

This is my focus....to have a school started here locally in our county that is full time and geared specifically for kids in the AS. It would range from age 3 (preschool) through 12th grade and be fully staffed with personnel who had specific training in teaching and guiding kids like Dyl. Also counselors and at LEAST 1 hour a day geared specifically toward social training (maybe more for kids that need it).

I know there is a school norht of here in Garden City that is similar to what I'm thinking, my goal this fall is to go tour their school too get an idea of what I want for Monroe county and then somehow go about making this dream a reality no matter what it takes.

The good news for this year at least is that the new pricipal at our MS is none other than the amazing Mrs. Flynn who was asst. prin at the elementary Dyl went too 2 years ago and was at for 3 years, so she knows Dylan like the back of her hand. This gives me some peace at least for this year in terms of how things will go on bad days.

Also, medication.
Ah...the loaded gun subject lol! Well i am happy to say that after much prayer and thought I have decided to stop medicating Dylan and have done so. My biggest issue with the meds were it didn't allow him to be who he was, and thus in my mind allow him to learn truly to deal with who he was and overcome in a right manner. He has been off the meds for nearly 2 weeks now and while his obsessiveness has been a little more than usual, I can't say I've noticed anything out of the ordinery so to speak. he also likes not having to take it, and I think that was key in this, he is getting old enough to where he will be able to make those kind of decisions soon and I felt like his input while not the end deciding factor was still somewhat important.


In a side note....Dylan and I competed in his (and mine!) first ever 5K race last Saturday and he took 2nd place in his age category!!! So proud of him...all those years of running out of the classroom have finally paid off ;) ROFL!!!!

Tuesday, June 1, 2010

2nd IEP called for, progress coming...

I read jenny McCarthy's book.

It's sooo good, haven't read it? do it.

I have a theory in terms of Dyl's condition that has formulated over the last few weeks that i plan to put into action. After spending lots of time pondering the idea's of HOW autism happens, (my brain literally never stops thinking of how it happens, seriously) I think I've formed a possible suspect (or 3 or 4 lol) as to what could be causing/caused it.

I need to do more research and then I will share, but i gotta tell you i'm excited to share so it won't be long!! :)

To share with others and for my own record...




everything you ever wanted to know about IEP's, bullying, special needs, you name it in the state of MI.

Friday, May 28, 2010

In a nutshell...

This article here describes in a nutshell what we live with with Dyl every single day.

the last few weeks have been incredibly challenging to say the least. The help on the PS front has all but come to a screeching hault (minus a few dedicated individuals) thanks to Dyl's behaviors *not improving* so to speak.

I have so much to update on, and I KNOW I will have time next week to expound on some of the things I have been reading, learning and discovering in his case.

Asperger's is such an incredible thing to understand, I have so much to tell/share I can hardly contain myself.

For now we have major house renovations going on, and I have Dyl's room to finish painting tonight :) If I have time Ill share pics of it.

Tuesday, May 18, 2010

Currently reading...

Jenny McCarthey's louder than words about her journey to the Dx of her son's autism.

So far it's pretty good, i got past page 60 just last night.

I'd love to meet her IRL and pick her brain on starting that school here in our city....this thought is never far from my mind, wanting that for Dyl and the other kids out there like him.

Thursday, May 13, 2010

Yesterday...

Dean put the kids to bed night before last and forgot to give Dyl his meds.

So yesterday at 11;30 I got a call from the school telling me to come get him because he wasn't wanting to work and he had called the teacher a name (or three actually).

Normally it's my policy to tell the school that i will not take him home, but yesterday due to him having missed his meds i felt it was best. Never the less i once again felt the pangs of wanting for him.

It is a great hope of mine that he could somehow, someday be in a school that could actually handle this sort of thing versus calling me AND then expecting me to come pick him up and take him home. The only other answer they have for this is to keep him and put him in detention. Not very effective or creative in my book.

Ya know...I get that they are not trained to handle this sort of thing which is half my battle. I really want to look into getting a school started here like the one up in Garden City, problem is I don't have the first clue as to how to do that or if it's even something i'm qualified to do. I see the need, not only for him but I know there has to be other kids either his age or younger/older that I'm almost positive have the same needs.

He of course spent the day hanging out not doing much besides bugging me and obsessing about his books :) He expected me to drop everything and take him to the library at one point and I put my foot down and said no. Thankfully there wasn't a huge meltdown over that one.


In other news...the bedtime battles are becoming ridiculous. he has a set bedtime yet everynight tries all e can to not adhere to it.
Last night he was told 9pm in bed with all matters done for the day, and at 9:11 he snuck down the stairs to get a snack...this is one of those things that falls into the *before 9pm* category, and when i reminded im and told him to put the cereal bowl down he cried saying he was hungry (not trying to be mean here, but he always has this major excuse for doing something he flat out knows is wrong) I said too bad put it down and go to bed to which he replied with a few choice words and about how much he hated me. *sigh* I called him back and had him sit on the steps and told him point blank I wasn't going to hear that and he now gets 8:30 bedtime tomorrow.

Somedays with him are like this....well most days are like this I should say. Constant drama and chaos, with the exception of times sandwiched in where he is happy and going with the flow (this usually involves him being satisfied with something he wants and has acquired). Is it any wonder I feel so stressed out at times?

Tuesday, May 11, 2010

Dyl is doing good.

Everytime i say that I have to prep myself to 8keep fingers crossed* so it seems.

At times tings level out and there are no major direct issues with him or surrounding him , and right now is one of those times. For that I am incredibly grateful.

That being said, we will very shortly be faced wit the middle school enrollment and next year him attending. This scares the ever living daylights out of me. This MS has a reputation already in my mind, being it was the main reason for me pulling my 15 yr old out and homeschooling her for the last 16 months versus keeping her there. She is now headed into HS in the fall as a freshman , and not only is she caught up academically but she is actually slightly further ahead (wen I pulled her she was barely a 5t grade level in math , social studies and reading/English).

Because of that I am internally dreading the day that Dyl sets foot in there. The bullying was worse there for my daughter as well, including some done by a teacher (that was the straw that broke the camels back in terms of pulling her last year) so not only is that a huge concern, but the overall difference in terms of changing classes, having more than 1 teacher to train (and yes I literally train them on ow to deal with him because sadly teachers these days are often times ill equipped with the knowledge and skills to handle kids with asperget's period). As if I don't have enough on my plate :/

My hope to to have everything else in order by fall so I can really focus on helping him make the transition better.


In the meantime we continue to work wit him on relating to and treating others appropriately. Dyl's biggest rival is himself and with a close second comes is closest sib Nate who is 10 and has a major case of ADHD. Nate is a very funn easy going (little) big guy, but he is going through that stage that Dyl is growing out of. Ya know, that wonderful stage of "I don't have to listen, behave, act nice, do what you say, listen or even like anything about you or that you say to me because I say so , I'm in charge and I'll do what I want" yeah , that stage lol. Because of that, both of their issues and the ever increasing testosterone from tese 2 pre teens, I'd like to take them out back like in the old days on a daily basis if you kwim LOL. I'll describe an episode later when I have a minute. My days are currently filled with spring projects and once those are done time will allow for more blogging.

Saturday, May 1, 2010

Moving over here....

I made the decision this week to move my blog for Dyl over here. I was having trouble finding the time (haha) to remember to blog seeing as it was 2 separate accounts. Plus I really wanted to have a blog called I love Dyl Pickles. All of my kids have cute nicknames we call them, Dylan started out as Pooka (think cute puppy dog in the movie Anastasia) but in the last few years we have transitioned to Dyl pickles. I personally love a good dill pickle (homemade preferred) and have all my life even as a kid I would eat them by the jar full. They are crunchy, tangy juicy and just a tad bit sour. Kind of like my Dylan.

I am hoping that having moved this over here, i'll be more inclined to post. I always have lots to say and share about our journey with him, and more and more i find myself wanting to tell others...not only for my own personal therapy, but also to help others who are in the same type of situation. I will delve into this more later.

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