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.
Sunday, October 9, 2011
Monday, July 11, 2011
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!!!
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!!!
Sunday, May 2, 2010
Splitting my self into 2
Ahhhh warm sunshiney days!!!
With the weather being soo nice I cant help but take the boys outside as often as possible, its great to get out and get away from the computer and the TV and the boys just love it!!
One day was particularly fun though, I took the boys to the park, its a very big beautiful park that has an area for all age groups! and LOTS of fun! (When I take the boys there with no husband or helper I put the boys under a very strict 3 chances law! If either one of them strays too far from the other 3 times, we go home! this has led to a couple of very short visits to the park, but they are learning.) The boys went threw their 3 chances very fast so we came home to play in the back yard, they were playing great and we were having fun, until.... (to understand this next part, just invision a foot deep trench along once side of the yard along the fence, and on the other side of the yard between the garage and the house is open, and the end of the driveway) .....John was headed for the trench and I was going to try and catch him before he fell, I quickly looked to see where Michael was and...yup he was headed across the yard for the driveway....hmmm what should I do, I dont want John to fall, BUT Michael is in more danger if he makes it to the other end of the drive way before I catch and divert John. So as much as it pained my heart to let John get hurt I had to chase after Michael and that is what I did, he was halfway down the drive way by the time I got to him, I was releaved that I got to him intime. Michael and I headed back to the backyard only to see John straddeling the root of a tree that runs across the trench, and get this, he was laughing!!!! Can you believe it, it was like he found his own private little pony ride.
Funny story eh? Well let me tell you, I am a proud supporter of the child leash!!! I wasn't always mind you. Before I had kids of my own, I thought it to be a discusting form of child care, now I say, If you dont believe in the saftey of a child leash, then come play outside with my kids for a day!! I promise your mind will be changed!!
With the weather being soo nice I cant help but take the boys outside as often as possible, its great to get out and get away from the computer and the TV and the boys just love it!!
One day was particularly fun though, I took the boys to the park, its a very big beautiful park that has an area for all age groups! and LOTS of fun! (When I take the boys there with no husband or helper I put the boys under a very strict 3 chances law! If either one of them strays too far from the other 3 times, we go home! this has led to a couple of very short visits to the park, but they are learning.) The boys went threw their 3 chances very fast so we came home to play in the back yard, they were playing great and we were having fun, until.... (to understand this next part, just invision a foot deep trench along once side of the yard along the fence, and on the other side of the yard between the garage and the house is open, and the end of the driveway) .....John was headed for the trench and I was going to try and catch him before he fell, I quickly looked to see where Michael was and...yup he was headed across the yard for the driveway....hmmm what should I do, I dont want John to fall, BUT Michael is in more danger if he makes it to the other end of the drive way before I catch and divert John. So as much as it pained my heart to let John get hurt I had to chase after Michael and that is what I did, he was halfway down the drive way by the time I got to him, I was releaved that I got to him intime. Michael and I headed back to the backyard only to see John straddeling the root of a tree that runs across the trench, and get this, he was laughing!!!! Can you believe it, it was like he found his own private little pony ride.
Funny story eh? Well let me tell you, I am a proud supporter of the child leash!!! I wasn't always mind you. Before I had kids of my own, I thought it to be a discusting form of child care, now I say, If you dont believe in the saftey of a child leash, then come play outside with my kids for a day!! I promise your mind will be changed!!
Monday, April 5, 2010
Over night trips with the boys!
AAahhhh where to begin????
Well lets start with Day 1 and the arrival to Nana and Papa's house, the visit starts out not too bad, the boys are curious of their new surroundings (we have not been there in about 9ish months), which is expected. There is alot of NO's and DONT TOUCH!!!'s happening, but all in all, its not too bad. We arrived late so it was pretty much straight to bed, which began a long round of screaming and crying, again this was also to be expected because 1. they had to sleep in their playpens and 2. again the new surroundings. Once they fell asleep it was great! They slept threw the night and did not wake us until 8:30.
Day 2: Started with the rearranging of furnature inorder to block off the halway and stairs, oh and to block of the entertainment unit. The boys were pretty good, they ate breakfast and then we got them dressed and went outside to play, we discovered that if we give them the freedom to walk just holding our hands, they are like little angles! We came back inside for lunch and then it was nap time....sofar so good!! After the boys got up from their nap they were restless and getting into everything from the dogfood and water, to finding things hidden that they were not supposed to touch, to climbing on the coffee table and chairs to reach things put up high! grrrr will they ever listen????? Time to go back outside (they seem to be best behaved outside so this will be my happy escape this weekend) We took them to the park, then played in the back yard, then from there we walked them to the store and back to Nana and Papa's. Now its supper time, Michael did great, he ate almost all of his hotdogs, John on the other hand made sure we remembered that he dislikes hotdogs with a passion as he threw each and every piece on the floor along with his macaroni salad.
Off to the tub we go, bath time and bed time....ahhh peace and quiet!
Saturday Day 3: We had breakfast and got dressed right away and went shopping, we had to stop at the mall and were going to meet up with Nana and Papa later, so off we went... We did everything we had to do and then had some time to kill so we made the boys walk the length of the mall with us twice (not a very big mall) I could not believe how good they were, even when I was alone with them while Aaron ran into a store, they just stood there holding my hands and waited soo patienly (who are you and what have you done with my boys?)
Off to meet Nana and Papa at Costco, again they were very well behaved!
Now we are back at Nana and Papa's house and its nap time, Nana and Papa will be home later, so Aaron and I enjoy a much needed break and just veg out infront of the TV. About an hour later nap is over and all hell breaks loose, again the boys are restless and getting into EVERYTHING!!! by this point EVERYONE is getting frustrated with them not listening, so its back outside we go until supper is ready. Once again supper is a disaster, there is food everywhere, and I am just about at my wits end! We clean the boys up and put them to bed, we have an early morning ahead of us!
We arrived in the city 8 hours early (we were not expected at my aunts until 5ish) so we made a quick visit to my Mom's to visit and freshen up (we left Nana and Papa's in our jammies half asleep for the long drive back and found no traffic and it turned out to be a quick drive back) We along with my mom took the boys for what was probably the longest walk sofar and they played at the park, then back on the road we went, the boys were asleep before we were even 2 blocks away from my moms, these walks are great for tireing them out!
We took the boys out for lunch and then headed off to my Aunts.
Easter Dinner at their Great Aunts, with their second cousins and their uncles. The boys had alot of fun playing with their uncles and cousins and didnt get into to much trouble, too many eyes around for them to get caught, and although the meal was again a disaster on the boys part (the kitchen floor looked like the meal exploded, they threw every last bit of food on the floor.) We had a great time. We didnt get home until just after 9pm but we all were glad to be home, as much as we love our families, there really is no place like home.
Thank you to ALL of our wonderful family members for putting up with us...I mean making Easter 2010 great!!! LOL
We Love and Appreciate each and every one of you!
Happy Easter!!!
Well lets start with Day 1 and the arrival to Nana and Papa's house, the visit starts out not too bad, the boys are curious of their new surroundings (we have not been there in about 9ish months), which is expected. There is alot of NO's and DONT TOUCH!!!'s happening, but all in all, its not too bad. We arrived late so it was pretty much straight to bed, which began a long round of screaming and crying, again this was also to be expected because 1. they had to sleep in their playpens and 2. again the new surroundings. Once they fell asleep it was great! They slept threw the night and did not wake us until 8:30.
Day 2: Started with the rearranging of furnature inorder to block off the halway and stairs, oh and to block of the entertainment unit. The boys were pretty good, they ate breakfast and then we got them dressed and went outside to play, we discovered that if we give them the freedom to walk just holding our hands, they are like little angles! We came back inside for lunch and then it was nap time....sofar so good!! After the boys got up from their nap they were restless and getting into everything from the dogfood and water, to finding things hidden that they were not supposed to touch, to climbing on the coffee table and chairs to reach things put up high! grrrr will they ever listen????? Time to go back outside (they seem to be best behaved outside so this will be my happy escape this weekend) We took them to the park, then played in the back yard, then from there we walked them to the store and back to Nana and Papa's. Now its supper time, Michael did great, he ate almost all of his hotdogs, John on the other hand made sure we remembered that he dislikes hotdogs with a passion as he threw each and every piece on the floor along with his macaroni salad.
Off to the tub we go, bath time and bed time....ahhh peace and quiet!
Saturday Day 3: We had breakfast and got dressed right away and went shopping, we had to stop at the mall and were going to meet up with Nana and Papa later, so off we went... We did everything we had to do and then had some time to kill so we made the boys walk the length of the mall with us twice (not a very big mall) I could not believe how good they were, even when I was alone with them while Aaron ran into a store, they just stood there holding my hands and waited soo patienly (who are you and what have you done with my boys?)
Off to meet Nana and Papa at Costco, again they were very well behaved!
Now we are back at Nana and Papa's house and its nap time, Nana and Papa will be home later, so Aaron and I enjoy a much needed break and just veg out infront of the TV. About an hour later nap is over and all hell breaks loose, again the boys are restless and getting into EVERYTHING!!! by this point EVERYONE is getting frustrated with them not listening, so its back outside we go until supper is ready. Once again supper is a disaster, there is food everywhere, and I am just about at my wits end! We clean the boys up and put them to bed, we have an early morning ahead of us!
We arrived in the city 8 hours early (we were not expected at my aunts until 5ish) so we made a quick visit to my Mom's to visit and freshen up (we left Nana and Papa's in our jammies half asleep for the long drive back and found no traffic and it turned out to be a quick drive back) We along with my mom took the boys for what was probably the longest walk sofar and they played at the park, then back on the road we went, the boys were asleep before we were even 2 blocks away from my moms, these walks are great for tireing them out!
We took the boys out for lunch and then headed off to my Aunts.
Easter Dinner at their Great Aunts, with their second cousins and their uncles. The boys had alot of fun playing with their uncles and cousins and didnt get into to much trouble, too many eyes around for them to get caught, and although the meal was again a disaster on the boys part (the kitchen floor looked like the meal exploded, they threw every last bit of food on the floor.) We had a great time. We didnt get home until just after 9pm but we all were glad to be home, as much as we love our families, there really is no place like home.
Thank you to ALL of our wonderful family members for putting up with us...I mean making Easter 2010 great!!! LOL
We Love and Appreciate each and every one of you!
Happy Easter!!!
Wednesday, March 31, 2010
Tantrums times TWO!!
Today started out great, after a rough night last night, my little munchkins slept til almost 8:30 this morning. Then it was breakfast time...... Lately the boys have been loving dry cereal for breakfast so today I decided they could sit on the couch with me and daddy and help themselves to the bowl I was holding....WELL, Michael wanted absolutly nothing to do with that and he made sure not only the whole house new about it, but im sure the whole town knew, it was just aweful, he threw himself on the floor, screamed and cried, banged his head on the floor or walls repeatedly and screamed and cried some more.
Once he settled down, I picked him up sat him on my lap and offered him some more cereal...NO WAY another tantrum, so I scooted him off to his room until he calmed down. Everything is right with the world again...well until nap time anyway.
The children have been going threw the "dont want to go to bed" phase again, which is fine, I can deal with that, but the hard part is that John insists on kicking the walls and door repeatedly out of frustration of not getting his own way, then they get out of bed and tear their room apart, from taking the mattress' off their beds to moving the whole bed frames across the room. Oh dear Lord, what am I going to do with these two!!
I will continue to love them and teach them and care for them and be patient, for this is only a season and this too shall pass!
At the end of the day when my two little angles are both sitting on my lap snuggleing with me...I remember just how much they mean to me, I Love them with all my heart, I wouldnt trade this for the world!
Once he settled down, I picked him up sat him on my lap and offered him some more cereal...NO WAY another tantrum, so I scooted him off to his room until he calmed down. Everything is right with the world again...well until nap time anyway.
The children have been going threw the "dont want to go to bed" phase again, which is fine, I can deal with that, but the hard part is that John insists on kicking the walls and door repeatedly out of frustration of not getting his own way, then they get out of bed and tear their room apart, from taking the mattress' off their beds to moving the whole bed frames across the room. Oh dear Lord, what am I going to do with these two!!
I will continue to love them and teach them and care for them and be patient, for this is only a season and this too shall pass!
At the end of the day when my two little angles are both sitting on my lap snuggleing with me...I remember just how much they mean to me, I Love them with all my heart, I wouldnt trade this for the world!
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