What an eye opener

So last night I spent pretty much the whole night in emerge (gallbladder attack, not what this blog is about) and while I was there I met this incredible woman and her precious daughter Emma. I recognised the signs of Autism right away, and thought a good opportunity to strike up conversation, I love talking to other parents under the umbrella, It brings a lot of insight, and offers encouragement and reassurement(word?). Well I certainly got more then I bargained for last night. You see Emma at only the age of 3 months was diagnosed with disease that causes benign tumours to grow throughout her entire body in the multiples. On top of that Emma has severe low functioning non verbal autism, she is just 14. It was all I could do not to cry while her mother was telling me some of the challenges she has had to face over the years, and then it was my turn to speak, suddenly my challenges with the boys seemed petty, small and insignificant. I looked at the woman and told her how I could not imagine going through some of her challenges and that my heart goes out to her, what she said next broke my heart. She said that knowing the tumours were not cancerous she would gladly trade in the autism and keep the tumours if it meant that for just 1 day she would be able to have a conversation with her daughter. That was it, let the tears roll because I was bawling. We then talked for hours about our children our challenges, our triumphs and the sheer Joy we feel when our children succeed the simplest task. As her husband got up to go home and get some sleep he looked at his wife so lovingly, so compassionately, so understanding, and she returned the look equally and it melted my heart, I began to feel guilty, guilty for getting frustrated with the kids, guilty for not trying harder to understand them, guilty for wishing they were more "normal" and most of all guilty for taking a lot of my "Autism" frustrations out on my husband. Emmas mom taught me a very valuable lesson last night, one that I know and have said time and time again, but was not living...Love is the strength in your relationship with your children and spouse, be patient with the kids, they really can not understand why your getting worked up over pooh on the walls, its just like finger paints after all, breath, because tomorrow is a new day, with its own set of challenges and most of all NEVER EVER GIVE UP! That being said I want to publicly say, Aaron I love you with all my heart and soul, you are my world my rock, I am sorry I always take my frustrations out on you, and I thank you for being understanding of that and never giving up! I know we both have days where we want to just throw in the towel and run, but at the end of the day when we finally lay down to sleep, knowing you are there restores my faith in us, waking up to you in the morning reminds me that together we are stronger and we can do this, we will and are doing the very best we know how and together we are raising 2 of the most awesome little boys the world will ever know (and Hope too!) Thanks for reading everyone and God Bless!!

Ahhh Teachers, you will either work with us or...YOU WILL WORK WITH US!!!

So my precious little JKer's have homework on the weekend, they have to write out 1 letter of the alphabet a couple of times and then draw or cut and paste pictures that start with that letter, this is nothing new to them as we have been working on them all year, in therapy and at home.. Laurie or Steph, or Mommy and Daddy, draw/write the shape or letter and then it is the boys turn to try. John picked it up pretty quickly while Michael seems to have some coordination issues, as well as not knowing which hand he is more comfortable using... So its sunday afternoon and Aaron and I decide its a good time to do some homework, Aaron takes John and Michael is with me, what happened next both shocked and devistated me. I put the pencil in Michaels hand, and he put it to paper and just sat there, waiting, waiting for me to move his hand, he refused to even try on his own, I knew he was waiting for hand over hand and so I did a couple s' with him and told him it was his turn, and again he just sat there waiting for me to make his hand do what it was supposed to..this is not right, what happened to my boy who would try :(. So I wrote a note to the teacher asking her to follow up with the EA's and let them know that they have to insist he at least try, even if it doesnt look like much at the start, he will get the hang of it, but he has to try. The response was that he was incapable of focusing and the only way to get the letters done is with the hand over hand technique, This did not sit well with me at all, I mean is that how his whole life is going to be? with people doing things for him...well NO I say NO WAY!!! so again I wrote a note explaining again that he has always been willing to try in the past, and that I dont want that to ever change. This morning only one day after my last note, Michael was playing with his etch a sketch, and would you believe he can print every letter of his name!!! Yes, he totally can, might not be in one line or in order yet, but he tried and he can...oh what a proud moment...yes friends I did get a bit teary, but they didnt over flow!! Parents reading this, I must say again and again, YOU ARE YOUR CHILDS VOICE, especially for those who have communication issues, and if you dont speak up on their behalf then they will fall through the cracks. Speak up and Be heard, its the best thing you can do for your child. I even went so far as to take a video of Michael printing the letters of his name, and I can not wait to show his teacher and EA, not to rub it in, but to show them that Michael needs much encouragement to try on his own, and he will surprise them. Over all it was a pretty good day, I kept the kids busy after school by showing them pictures of their friends on facebook, then supper and bed, minimal screaming, fighting, crying etc... One day at a time...Lets see what tomorrow brings.

Help!!! Please, all I need is a little help!!!

Oh what a day this has been, I am about ready to pull my hair out, as always the day started with pooh all over Michaels room, why oh why will this kid not tell us before, no he just sits up there quietly at who knows what time, takes his taped on backwards one piece pajamas off and poohs in his room, then proceeds to wipe it on everything, uuuggghhh deal with that later, get him cleaned up, get all kids cleaned up, with Aarons help of course (he really does do a lot for those who always hear me complain about what he doesnt do lol) now everyone is supposed to be eating breakfast...you know how that goes from my previous post, meanwhile mommy has gone downstairs to put Hopes cloth diapers in the wash, come back upstairs to find the kids are no longer eating but getting into everything, and half my clean unfolded laundry is on the floor, put movie on, and plan my day...hmmm still getting into trouble, ok well its 10:30 lets have a short quiet time so that mommy can get snacks packed while Daddy gets lunches ready...crap, Michaels room is still a poopy mess...uuuhhgggg, okay just put him with John in Johns room, how bad could it get in 30 minutes...I will tell you how bad, 30 minutes later, both boys are naked and yup you guessed it, there is pooh now in Johns room too :'( just get cleaned up, eat your lunch and go to school... if only that could happen without the screaming and crying, and fighting to get their clothes on and shoes and out the door...AAAHHHHHH!!!! I already feel like I am losing my mind and it is only 11:30...its ok, we have a couple hours to clean up and fold laundry.....WRONG!!!! gotta take the husband and go to Home Depot to get some parts for a job he is working on, by the time we get home from that guess what, its time to go get the kids from school, That adventure was actually really good, they are settling into the routine and getting used to the idea that they are not allowed to run on the street, so that was a definite highlight, until....we get home to learn that Daddy is going to be later then expected as the emergency is a lot worse then expected... but...but...I cant do this alone, no really I cant, call me a horrible mom if you want, but you better make sure you live a day in my shoes first!! So Aaron comes home for a few minutes because I need to contact a local plumber, he makes the kids pb&j for supper while i am on the phone, then before he leaves he goes up and cleans both poopy rooms...Thank you hunny, if he didnt do that bedtime would have been real interesting, so the kids eat and the phone rings, the person on the other end is someone I love very much but never seem to have a moment to call, so I talk to her for a few minutes, semi-oblivious to what my kids are doing, they are safe but quite honestly as long as they are safe then for the moment i dont care what they are up to...well I regret that pretty quick, Michael and John dumped 3/4 of a bag of cheerios on the floor and then proceeded to go upstairs and run their own bath and get in...its not bath night but I admire their ambition, until I step in the massive pool of water on the bathroom floor...come on now really? Enough is enough, get out of the tub and get to bed...another war and finally...ahhh kids are in bed and asleep, now I have to clean up after what appears to be a cyclone that has gone through my house...oh please can I just run away....I really just dont want to deal with the constant behaviours and my house being a disaster all the time, any more... God please give me strength because I am at my wits end here... Dont get me wrong, I love my family with all my heart and wouldnt trade them for anything, it just wears a person down sometimes. Thank God though for good friends and a wonderful husband, without them I would be a total basket case, now I am just partial LOL

JK is here... Lord Help me get through

Well we are almost at the second week of school, and still struggling to get through the day to day routine, the boys are only in half days, and I am finding it difficult to get organized, and settled. Our day starts with, waking up, pull up changes and what is supposed to be breakfast, I say supposed to be because it is actually a big feat of "no" "don't touch" "get out of the fridge" "sit down and eat" "leave your (sister, brother, dog) alone" "sit down and eat" "no school until after lunch" "no you cant have your snack" "put it back" "sit down and eat" "get in the house" " no touching"...... you get the point. this portion of our day usually ends in breakfast on the floor and everyone screaming and crying. Next its "ahh its only 9:00!!! What can we do to keep them busy tod....Dont touch!! Get out of there!!! NO SCHOOL UNTIL AFTER LUNCH!!!" this goes on for about an hour or so as we struggle to keep our little busy bodies busy, this usually ends in a short half our quiet time so that Mommy can get lunch ready and get everyones snacks repacked and just get over all organized. Lunch time is at roughly 11am and it starts with "Michael come on!!! why did you take your clothes off, why did you poop on the floor, why oh why will you not tell mommy and daddy when you have to go and go on the potty!?!?!?, come on lets go get you cleaned up and dressed its lunch time" things go pretty ok from here, the kids all eat lunch, Mommy finishes getting ready and its off to school we go....the walk is about a kilometre each way, so it burns off some energy so that they can focus a little better (I hope)however it also has its challenges, they are wearing their back packs so the monkey harnesses are not really an option here, but a brilliantly creative friend of mine thought of an idea to use her jogging strap on her stroller as a sort of handel for the kids to hold onto...hmmm thats great but I dont have one and I need 2...hmmmmm the leash (for lack of a better word)from the monkey harnesses would work great, now I have 2 handles and they boys actually hold on to them for the walk....what a relief because let me tell you we had some major challenges that first week, one day for example Aaron was walking them to school and John got away from him and ran out in front of a bus...FREAK OUT!!! Thank God in Heaven that my kids have angels all around them. Anyway from what I am told the school days have been going pretty good, they have an EA that stays in the class with them and although they cant sit still they have been coming home with good listening stamps every day, so that makes me proud..and jealous lol. The walk home is a little more challenging the kids are tired but excited about their day, but we make it, and the nightmare begins again..."dont touch" "away from the stove" "would you just for once go play with your toys and let me cook supper in....Aaron!!!!! Hopes on the table, Johns running out the door, and Michael wont get away from the stove HELP!!! Supper time is the same thing...then finally bath and bed...ahhh peace and..bark bark bark bark...REALLY!!!! :( That is our day in a nut shell, its a challange and most days I just want run away, find a new life and forget all the struggles and challanges, I mean my house is a right off, laundry doesnt even get folded and its back in the dirty pile, Im tired and emotionally worn out.....But!!! BUT!!! Every night I go to bed and I think about my day, and I try very (sometimes very very very) hard to find the new positive....hey John ate all his supper without getting out of his chair tonight, Michael didnt bang his head at all today, Hope said a new word, I have a husband who loves me at my best and worst, and I remember that life is short and time travels fast, and before I know it my kids will be off having their own challenges, how I handle mine will teach them how to handel theirs, so we will continue to do the best we know how, we will continue to be open to learning new and creative ways to encourage our kids to learn and grow, we will be the best parents we can be. For anyone who has been following, I know my blogs are far and few between, I am sure you all can understand that my hands are very full, anyway the point I want to make is that yes in my previous blog the head banging and fecal smearing had almost stopped, but now I am mentioning it again, well that is because the boys fell back into old habits, this is common, we have had it happen a couple of times actually.... when they were babies, like 10-12 months, I could get them to repeat some words then one day they stopped then when they were 2.5 they were learning words through therapy, we moved just after their 3rd birthday and a couple months later they just stopped again....it wasn't until early spring that they really started talking again like in sentences...I hope it sticks...but anyway that is just an example of how things change some times its like 1 step forward and 2 back or at least thats what it feels like. They will get there one of these days, it just takes patience over and over again. Enough for now, (gotta go get the boys from school) Take care Niki

Progress...We have AMAZING PROGRESS

So in my last blog I wrote mainly about the trials and challenges of Autism, Today I want to share what faith perseverance and determination can do....

I will start with Michael, as our challenges with him have been some of the most worrisome. Michael as previously mentioned is a head banger, and not the heavy metal kind.... When frustrated, angry, sad, overwhelmed, Michael would run and bang he head on the hardest surface he could find, and there was not stopping him, we would try to restrain him and we would end up getting bashed in the face by his scull...Can you say OUCH!! Well it was quite normal for Michael to be seen with a big bruise or goose egg on his forehead, and when rubbing ones hand along the back of his head you would feel many bumps and .. divots in his poor little skull... It was so hard, so scary, it left us feeling soo helpless, we knew something was wrong, and would do our best to divert the situation (no matter how many smashes to the face we ended up with) but there was no stopping him...Finally early December we got a call from the behaviour intervention people, Michael and John had been fast tracked to the top of the "waiting for the waiting list", list (see we are still on the waiting list to officially be assigned a team, but in the meantime some workers come out and help us figure out how to solve the most severe issues)YAY!!! Finally our prayers and Hopes were being answered, 2 wonderful ladies came to our home and showed us a technique to stop Michael from banging his head (add in getting his own room which I will explain later)and within the first couple of days we had amazing results, Michael had gone from banging his head 30+ times a day to only a couple of times that week...oh the Joy, relief, and sheer happiness we were all feeling...Well that weekend We had an accident at Costco that involved Michael falling and hitting his head on the concrete floor (a story for another time) This triggered the head banging to start all over again..We figure it was because he was in pain from the fall and didn't know how to tell us...not that we could do anything for the pain, the boy will not swallow medicine of any form...That Monday our ladies returned to evaluate progress, they were sad to hear of our set back and we all agreed that we need to work on communication (yes they are in speech therapy, but this is different) So over the course of an hour They taught Michael how to ask for what he wants...very simple one word requests...within a few hours of them leaving our home, Michael was no longer banging his head repeatedly and he was beginning to ask for things...

Christmas came and went and Aaron and I continued to use the techniques we had learned, and by their first day back at preschool, Michael had completely transformed from a child who bangs his head to show emotion, to a child who asks for what he needs, for example: Pre strategy, Michael would need help getting his boots off, so he would scream and bank his head, now instead of that he will look at you and SAY "NEED HELP". Now we do still have incidents but they are far and few between, I am soo very proud of my little Munchkin...and his vocabulary has picked up amazingly too!

Now as for John... Well John has a very Jealous and posessive personality, and for those who know me well, you will know where he gets that from LOL. The problem with this is that for the most part John was Michaels trigger for head banging, and Michael was Johns trigger for lashing out, because John would appear to have a problem with all the attention Michael was getting, or because Michael would have a toy that John wanted and the fights would begin with hitting, biting, taking what he wants..and end with screaming, crying and head banging..Aaron and I finally decided that this type of a relationship was not doing either of them any good and perhaps they need a break from eachother. So Aaron and I packed up and moved our bedroom to the basement, put John in Hopes room and Hope in our room...Ahhh peace has been restored to a degree, as of lately John had been developing a true attitude problem, but I fear it has less to do with Autism and more to do with being 3. John has demonstrated the ability to follow a chain of commands, and his vocabulary had developed increadably, to the point where on a good day you can actually have a full conversation with him in cotext to the topic...Soo Proud of John as well, but he has a defiant side, when you ask him/tell him not to do something and he just looks at you with a grin and does it anyway..as much as this seems like a negative (which in a sense it is), it is also a positive, it shows that he comprehends exactly what is being said to him, it show that he understands right from wrong, and it shows that he has the ability to make decisions (good or bad decisions? well that is another story all together).

So as you can see we have had great progress the last couple of months, and the BEST news of all is that their Therapy team said they are definitely ready to go to JK in the fall, so we dont have to hold them back from joining school the same time as all the other children their Age!

Mom's and Dad's, my message to you is this....You child with Autism will not just "snap out of it" one day and be fine, increasing your child's development can only happen if you get the ball rolling, make the calls, fight with the specialists, Doctors, teachers...and anyone else until your voice is heard, because my friends, YOU ARE YOUR CHILD'S ONLY VOICE in that big cruel world out there...It takes hard work and dedication, but this/these is/are your children, they are worth it, and like I said in my last blog GOD CHOSE YOU TO RAISE THIS PRECIOUS MIRACLE, BECAUSE YOU ARE THE BEST PERSON FOR THE JOB... Nobody knows your child like you do, nobody loves your child as much as you do...This is your responsibility so wear it with pride, because when your child says their first sentence, or dresses him/herself for the first time, or follows instructions...or ... or ... or (the possibilities are endless) then you will see and feel the Joy of knowing you are doing right by your child...

They are worth it!

P.S. I want to give a special shout out to one of the greatest Speech Pathologists, Tanya without your "Rock Talk and Play" group, I don't know if we would be this far ahead, you taught us some great skills to teach our children with
...Thank you!!!

How Autism has affected our lives

Clearly since we heard that there was a possibility of autism we have not had much time on our hands for anything much less blogging, but tonight, I didn't feel like folding the laundry, while watching a couple of shows I recorded with the pvr, No tonight, with Thanks giving here, I want to reflect on the past year, I want to share, and not that my blog ever gets much attention, you never know when a desperate parent may stumble upon this and hopefully find some peace.

Around the time when the boys were about 14ish months, I had many concerns, now I had, had concerns long before this that M and J, were not talking very much, or at all for that matter, but everyone including doctors told me it was just a twin thing, they have their own language and when they are ready they would start talking our language. This did not sit well with me, I mean they were over a year and had NO/NONE/ZIP/ZILTCH/NADA 0 words.. So I began to ask questions, The boys and I were regular members of our local Next Step/Mother Care group,(an amazing group of people and helpful organization I might add) I started talking with the Facilitator and Director and health nurses and children workers, basically anyone who would listen, they hooked me up with an amazing child worker, she was loud and fun, She helped me begin the process... before I knew it we were signed up on all the 1 year waiting lists for speech path, Occupational Therapy, Resource Teachers, as well as early childhood development referrals to get the boys into a daycare, so they could begin socializing to help speed up their development.

Well time passed and I had not heard much (remember the 1 year waiting lists), so I began to push and push my family doctor. She finally gave me a referral to a pediatrician. Towards the end of June 2010 We finally had our appointments with the Pediatrician, she immediately suggested the boys were autistic, and had us put on the ASD test waiting list (about 10 months long) Now I am not going to lie, at first my husband and I were totally devastated, well I was he was in complete denial.

It was very hard, I mean society teaches us that Autism is a severe disability, and hubby and I had been hoping to have another baby, but when the word Autism popped up we decided that they boys were going to need much more attention so we stopped trying, only to find out 3 days later we were pregnant...devastation set in again, how was I supposed to raise a baby AND two Autistic boys... I cried myself to sleep that night, and when I woke up in the morning, I realized that these to very precious boys are the exactly the same children they were before the pediatrician ever mentioned Autism, and I wanted another child then, why should that be different now. Besides now that we knew, we could start getting them the help they will need to live their lives as "normal" as possible...Happy again.

Not even a month after seeing the Pediatrician, our names popped up at the top of the waiting list for ot, speech...etc. AND...AND.. the boys started at the daycare as well, I was relieved that we had already started the ball rolling to start the services they needed, and now our waiting was over. Except for the dreaded ASD test... The rest of the year went on , and we began to see an incredible improvement in the boys when they would return home from school. (daycare).

Well March of 2011 came and we had our ASD test, as well as a precious little bundle of joy,a beautiful baby girl :-)

The test confirmed what we already knew... Both boys are at a medium level of autism. We had workers coming to our home now on almost a daily basis, and it was paying off.

Now I don't want anyone to think for a second that just because we have the boys in all these programmes that our lives are simple, because I guarantee you there is nothing simple about it. We have sensory issues... M does not feel pain or comprehend actions and consequences, J is very sensitive, aggressive and also does not comprehend actions and consequences. Both are non verbal (although they have started picking up some words, they don't know what the words mean, nor do they use them in context) which makes communication very difficult, they don't adapt to change well, and I know what your thinking "nobody does" well To someone with ASD change is worse, and M and J have a very special coping mechanism to help them deal with change, it is one that is a nightmare for us, but it seems to get their point across that they are not happy with the changes that just took place...It is fecal smearing, and I am not talking about a little finger painting with the contents of their diaper, I am talking EVERYWHERE, WALLS, WINDOWS AND SCREENS, CARPET, FURNACE VENTS, TOYS,CARPET, EACH OTHER!!! like I said it is a nightmare for us.... The boys are also very destructive, it is like they have super human strenght, who thought a 2 year old could kick a big hole in the back of their dresser??? they have torn up carpets, destroyed any book we have ever given them, and most of their toys are now garbage too. When M is frustrated, upset, doesn't get his way, or just having an over all bad day, he will bang his head off the hardest surface he can find, it is so scary, because he never just bangs it once, he has little dents in his scull, and there is no stopping him or diverting him, if you try he will bang his head off of your face, and then run and find a hard surface, J in a similar situation will throw himself on the floor, he will kick and scream, he hits and crys for what seems like hours. I am not listing all this to scare anyone, just showing that with all the help in the world, it is still not so easy.

We have some amazing times though, you know when you have a baby and they take their first step or say their first word? and you are overwhelmed with joy, you have a sense of accomplishment, you almost feel reassured that you are doing a good job as a parent, well With our little angels, we have the pleasure of experiencing that joy on almost a daily basis, because even though they cant talk in a way we can understand, they have qualities you would never expect to see in a 3 year old. M can count to 10 and he recognizes what the numbers look like, he has even been trying to count backwards, J has a photographic memory, We don't need a GPS to get anywhere we have been once before, because J knows the way, and let me tell you he loves 3 places, and gets upset if we dont go there when he is directing us towards, walmart, MacDonald's, or Nana's house.
Every once in a while a new word will pop out that they have never said before, and it is in context and at the perfect time, for instance; I was handing something to M, and in my efforts to teach them manners, I said thank you when he took it, well didn't he look up at me and say "your wewcome" ??? what did you say? although we have not heard it again, it was that joy that we must be doing something right that overwhelmed us.

I guess what I am trying to say, is that Autism is not, nor does it have to be a life sentence, yes it is a new ...Adventure every day, and yes you will have to work with it every day, and yes at least 1 parent does have to stay home from work (2 or 5 would be ideal but lets be realistic), yes you are going to have tons and tons and TONS of appointments, and yes Autism is expensive (even in Canada when we get all these programs free) and yes, a very high percentage of families with an autistic child are living at or below the poverty line. Yes you are going to have days where you want to give up, give in and quit, BUT when you pick up your sons (in my case) and look into their beautiful eyes, you wrap your arms around them and realize that God trusted you, that is right he trusted YOU to raise these precious, very special gifts, He chose you because he knows you are the very best person to raise this child, and that nobody in this world could raise your child the way you can, when you realize what a gift that is, everything else is just life, but the love you have with that child, no matter how uncommunicative they are, the loving bond can be seen in their eyes. It is Totally worth it.

So in closing, I know this is quite the ramble, but I hope that if you are a parent of a child with ASD, and you are reading this, that in some way, it has helped you realize that we are not alone, and there are people that understand exactly what you are going through. If you have any questions, tips, or even just want to chat about your child with someone who understands, feel free to leave a comment, I would be happy to talk with you.

Thanks for taking the time to read my blog

Niki DeVries.

EARLY INTERVENTION IS KEY

Yes it has been a very long time since I posted a blog, over a year infact, but things have been very very busy. You see the boys have been diagnosed with moderate Autism Spectrum Disorder (explains alot) and we have a new addition to the family, Hope Erin Scarlet DeVries was born on March 10th, 2011. weighing in at 5lbs and 15oz. She is a wonderful addition and brings all of us much joy.

Back to the boys. Shortly after the boys 1st birthday I started to have concerns about their delay development, so I started asking alot of questions, I had us put on waiting lists for speach and occupational therepy, my thinking was that I would rather get them help and find out there is nothing wrong, then not get them help and find out that something was wrong.. In June of last year we met with the pediatrichan who told us that the boys were probably Autistic and she would put us on the list for the tests... in the at the very same time we found this out, we found out we were pregnant, and then just like that our names reached the top of the lists for occupational therepy and resource teachers and...and ...and.... We ended up putting the boys in a day care for 2 half days a week where they would work on socialization skills as well as life skills. best move we could have made for the boys, they began to grow and develop almost immediatlly, we were thrilled with the results.

On April 4th of this year we recieved the confirmed diagnosis of Moderate Autism, I am so glad we already had the ball rolling with all the necessary programs, because you see, now the boys have an excellent chance to attend school with vertually no sign of their "disability".

The moral of this story is...you guessed it Early intervention is key, I tell all parents out there to please for your childs sake just trust your guy, nobody knows your child better then you, if you feel that there may be something wrong persay with your child, what is it going to hurt to have them checked out? your pride may be hurt but who cares if it is for your childs benifit.

If anyone has any questions about Early Intervention or Autism, please feel free to contact me through the comments, and we will connect, I am happy to share anything I know for a childs sake.

Until next time (who knows when)

Take care and God Bless!!!