Autism As A Whole

1.What are your children's names, ages, diagnoses?

Chucky is 5 years old and has been diagnosed with Mild/moderate autism and Sensory Processing disorder.
Buddy is 7 years old and has been diagnosed with Aspergers syndrome, Cri du Chat and Tourettes syndrome.

2. What would you say was the most challenging experience that you've had while advocating for your child(ren) so far?

I think the most challenging part of advocating for my children was the initial diagnosis. My son was receiving many services through Early Intervention for years and I had continued to express my concerns to the doctors for years. They kept telling me that he was just delayed and there was nothing else going on with him. Finally I started video recording his daily activities, meltdowns, speech, motor skills, ect. I brought this to the doctor and got a completely different response. It is hard for them to figure out what is going on with your child in 10 – 15 min. and they don’t always act as if they are having issues. I think the hardest part is dealing with the schools and doctors who may not see the extent of their problems as often as you do as the parent and so I have often felt alone, and doubted.

3. What was the most rewarding experience?


The most rewarding experience is a tough one to answer. There have been so many rewarding moments. In terms of advocating I think the diagnosis was the most rewarding but.. hearing my son say he loves me still gives me shivers. All the small moments that I have noticed weren’t as big a deal with my two girls cause they happened all the time are so wonderful from the boys. Like when they remember to say goodbye to me or when they want to snuggle! I remember when my son drew his first person and it had eyes, ears, mouth, nose and a belly button!! It was in May of this year and I was so excited. There are many rewards and I might not always see them but when I am made to sit down and really speak about it and think I can tell you there are endless rewards. The biggest of all is the smile of achievement when they accomplish another goal that nobody thought they would accomplish. Have faith cause in time they do surprise you!

4. Have you had any experiences where you've met with resistance from “those in charge.”

Most definitely, I have had teachers that argued his diagnosis, argued his abilities. Some who would say that he could do things that he clearly couldn’t. A doctor who thought that medicating my 5 yr old at the age of two was reasonable but wasn’t willing to figure out what was causing his distress. I had a neurologist that saw my older son and told me he had ADHD and wanted to put him on meds for the Tourettes. We tried it but when he became borderline paranoid schizophrenic, I wanted them stopped but instead she tried to increase them. My son is now off all meds and on vitamin supplements to help ease his anxiety and for him it seems to work. Not every child is the same and I wish that the doctors would consider this. I also found resistance with the schools although I have resolved that. It is hard to acquire services and even harder to ensure that the plans are followed.

5. Based on your experiences, do you feel that the role of advocate should be more along the lines of “defender ready to do battle” or “mediator, gaining acceptance and working on a compromise?” Which do you think is more effective?

Honestly, that is a tough call. In the beginning, I was a defender. I did not know any other way and I was not being heard. I really think it depends on circumstances because I think there are certain things that I will not compromise on but, I also had to put my guard down a little to hear exactly what they were saying as well. Sometimes they have wonderful thoughts for your child and as hard as it may be to see at times, they also want what is best for them. In terms of effectiveness, Mediator works better than defense because when you go in in defense mode everyone is on guard and your ears are not as open to what the others are saying.

6. In terms of the above question (#5), how do you view your own role as an advocate?

I usually go into the meetings as a mediator, always willing to listen and come to an agreement as to what is best for my son. It allows me to ensure the best for my boys without clouding my judgements based on my own fears. After all working as a team is more effective than working against a team!!

7. Do you have any currently unresolved issues, things you are actively advocating to receive?

No, I resolved all my issues at the end of last year to ensure they were starting school with all services in place and so far everything is working great. We communicate and work as a team.

8. If you could share on piece of advice with parents who are new to advocacy, what would it be?

Don’t react, respond. You are more likely to be heard if you respond in a calm manner with facts instead of reacting with emotion or fear. I would also suggest writing down questions/concerns before the meeting and try not to be like me and forget your notes at home. It isn’t as effective!! Make sure that before the meeting ends all of questions are touched on and discussed. This way you walk out of the meeting feeling as if you have received input on all of your concerns and that you all participated as a team not you sitting in a room of people discussing your child without your feedback. Don’t feel intimidated as it can feel very intimidating and keep it in your mind that children do act differently in school.

9. Is there anything you would have done differently?

I think the way I approached certain meeting could have been done more effectively but, in the end result I learned a lot and have accomplished what my beginning goal was without a lot of anger and head butting.

10.Do you feel that your child's (children's) placement is appropriate at this time?

Yes, I think my younger son is still in trial session as the class size is much bigger than they perceived but so far he seems to be adjusting well. I hope that as the year goes he will continue to do well. It is difficult for the teacher to see the social issues with my son so far because he is in Kindergarten. Many of the NT children have not been in school at all yet so, they are just learning social skills but Charlie has had three prior years of school under his belt and still seems a bit delayed to the children in his class. He doesn’t defend himself but the teacher is open to suggestions which makes it all easier. My older son is doing immaculate and I am very pleased.

11.Any final thoughts, ideas? Opinions? (Here's your chance to let it rip)

Please feel free to answer these questions as well. It helped me to put things into perspective and understand them better. I would love to hear what everyone else feels as well.

I know my blog posts have not been steady but as most of my readers know, times get tough and it is hard to find the moment to be able to sit down and pull all your thoughts together to blog. I do a lot of my venting on Facebook and diary entries on my son's page. That works for me cause usually there is someone online to relate and comfort when I need that.

Chucky Cheese has been having some terrible meltdowns but he really loves his school. I often get asked how I manage it all and I honesty am not sure. I think it is a question many of us get asked by those who can see and acknowledge the problems. Then there are those who do not understand and tell you it can't be that bad. I don't wish my path on anyone but as I heard from another parent, I wouldn't trade it either.

Last night I went to an Autism Spectrum Disorder Parent Support Group. I typically go to the day groups but decided I needed to go. I am very glad I did. Did you know that the process of accepting a child with a disability is very similar to that of losing a loved one? I remember feeling scared and a little lost at first but I think I skipped the denial phase and I even skipped the loss feeling.

I was having so many issues with him that by the time they were listening and diagnosed I had already accepted it. Maybe I just had to do it this way to hold it together. I was angry, not at my boys but a little at myself and a lot at the life that they had been given. But.. I do know that it could be worse and that put all my feeling in check.
With Buddy, it was much harder and it left me feeling guilty and I was confused as to why it hurt so much more. But again, I moved right past that into "Fix mode". What could I do to help them. I needed to get services in place.. ect. I was aware of the grief cycle but never really thought about it in terms of my children's diagnosis. Where are you in this cycle and how long has it been since diagnosis?

The other thing that was mentioned was how we need to spend time for ourselves not so much as moms and dads , but as people. Touch base with your feelings about it and try not to bury them under all the attention that is surrounding your child(ren). You need to feel and that helps you heal. It is ok and very normal to throw everything into your child when they are diagnosed and find all the services you can. This can also cause you to shove your feeling and emotions down so you don't have to deal with them. Eventually I am certain they will surface. It is hard and I have times that I am very angry and I have a short temper with people who are close to me because in the back of my head I know they will not leave me.

I have realized that I do not want a cure for my boys, I don't want to fix them, I just want them to learn how to cope and become independent people. They have a lot of potential and I want to encourage that. I want to teach them the strength that they taught me. Next to patience, strength is the biggest lesson I learned. If they can be strong and still smile regardless of what is going on around them then so can I. Now that things have calmed a little I think I might take the time to cry, feel and deal with all the emotions I have buried under this rubble called life.

 I didn't want this space to be filled with the negative hardships that I go through everyday. I wanted it to be a good resource for other parents, but if I don't include the trying moments it seems unreal. My house is never calm which I wish were different.

How do I find the moment to blog? Hmm... well I must confess that I blog while my children are eating and I blog when they go to sleep. Sometimes I spend the late nights reading other blogs in hope to find that miracle trick that other parents use to juggle everything they need to juggle while maintaining a happy home.

For those parents who can clean the house, have time with your spouse and your children, I give you a lot of credit. I don't know how they do it. I swear they must have a bunch of closets to shove everything into. I mean, how else can they do it? Just shove it in a closet and pray to god no one opens it. It is no wonder they take people's coats instead of having guests hang them in the closet. They would open the door and everything imaginable, including that month old banana peel, would bury them alive!

 My boyfriend thrives from quiet and calmness, which I feel I cannot provide. My children speak very loud because we always seem to have to compete with screaming. I think I have become immune to it. I can carry on a conversation with an adult while maintaining my children's needs. There are times that I can be talking to an adult and dealing with a meltdown at the same time. I know it may seem rude but the majority of my day is spent dealing with one issue after another. Does anyone else feel as if there is never a dull moment?

5/24/2011
Chucky Cheese is progressing well lately and that makes me smile. His speech is amazing and he surprises me every day with a new word. He really is a smart child. I remember when I would beg for him to speak and now I find myself begging for a volume button! The meltdowns are still there and we struggle with them every day. The meltdown kit helps him through them and I have begun to set more boundaries.

Well, summer school has ended and the chaos never seems to end. I clean, they mess, I clean again. Physical fights and screaming throughout the day. I am not sure how every other parent does it without losing their minds. Any thoughts? I went camping with some friends and all of my children and it went pretty good. At least better than expected!! There were a few meltdowns but they were manageable. It seemed to be a stressful trip for me though because I was walking on egg shells not sure what would trigger them.

Nevertheless, we had fun and the best part was the kids faces when they went swimming in the lake. Chucky loved the Orange buoys.  My camera broke when we were there so that is an extra stresser cause I don't have enough right? Chucky has been having toileting issues as of late and I am not sure how to handle it. He is wetting himself throughout the day. Isn't regression great? I am so excited to clean pee off of every floor in my house. Yippeee!!! Sorry for the sarcasm but I did say I was stressed.

I haven't been blogging as much cause it is so hard to concentrate anymore. I cant sit here for more than 3 min without an interruption and then I never seem to get back. When I do, there is other things on my mind and I just cant write. I hope this gets better with school coming up and I can sit down and maybe finish some of the 50 drafts that I had started but couldn't finish but don't hold your breathe. I just wish some of this craziness would ease off for a little while. Well, that was a scream crash boom...... Gotta go!!!!

So, today I decided to allow Chipmunk to have a sleepover. We invited her friend Emily to spend the night.  I thought it would be great cause it would keep her occupied. Boy was I wrong. She had such an attitude over Princess playing with her friend. She said E was her friend and should only play with her. I am not talking about a minor hissy fit. She was in tears pouting and yelling at her sister as well as her friend.

As any other "good" mom would do, I mirrored her attitude and told her that maybe we don't need to have sleep overs ever. That just made her more upset. Well, I really had to come up with a natural consequence that would resolve the issue while teaching a lesson.

So, I told Princess she could not play with them and I told Chipmunk that since she had a friend over and wanted her sole attention she could not play with anyone but Emily. This didn't seem to phase her at all at first. She went along playing dolls with E. Then I had to calm Chucky Cheese down cause he loves to play stuffies with E and that was not able to happen under my rules. When Chipmunk heard Chucky going she got very quiet and started to say something but cut herself off saying never-mind.

Do any of your ids do that? Chipmunk has the most annoying habit of starting to say something and stopping mid word as if you had interrupted her and saying ugh.. never mind. But, I never interrupted her or even spoke to give her the feeling I wasn't listening. It really is annoying and I have given up on asking her what she wants, needs or feels. Now I tell her,"When you are ready to talk to me I am here." She hates that comment cause she wants me to beg for info. Nah uh... not happening!! I am stubborn too.

Well, all went well until Chipmunk and E needed a tall person to pick some apples and I chimed in all sweet, "Sorry sweets, you didn't want your sister to play with you two so she cant help you." I suggested she use a stool. As she came in to find it she asked for help so I kindly obliged. I found the stool and called her name. She responded with a "WhhhhAAAATTTT". I was definitely taken back by that tone. I told her she had better tone her voice down with me or I would just send her friend home now and she shrugged her shoulders saying, Fine whatever. I couldn't believe her careless response so I then said,"and, if they want you to sleep over you wont be able too." She still shrugged her shoulders and said fine whatever.

The next statement though that followed right after that blew my mind. She then said,"I will just go home as well." When she says home she is referring to her fathers because we have joint custody but she is primarily there. I didn't even hesitate or flinch at that remark cause Mommy was on a roll. The words slipped of my tongue like water on baby oil. I said, Honey, you are home. She looked at me with a blank stare whipped her body around and walked out side. The look of defeat was clearly written all over her face. I won!!!

Well, the rest of the evening started to look up and in the end they were all playing nicely. I guess the saying,"You never know what you have until its gone", really held true today. I am proud that I managed to hold all my frustration in cause she really was pushing on my final nerve and I noticed when I started to lose my composure the slight grimace of accomplishment on her face. But... Mommy won hands down today!!

It is finally the end of a very long and eventful school year. I have found myself counting the days till the children get out of school. Sometimes I am thinking,"Oh my, how am I going to survive the summer?" and other times I find myself relieved that the school year is at an end. I know I have a lot of work ahead of me for the summer and so I really need to come up with an at home therapy schedule. I don't want it to seem like work to them but I want them to continue progressing through the summer. It is heartbreaking to see them regress. I also know that if they are going to regress, it is just going to happen and there might not even be a way to prevent it. It is all part of the territory. 

I just have to express how hard it is to raise a pre-teen and I find it scary to think that she will be a full blown teen very soon and it is all downhill from here! Currently, I have to practically beg her to shower and clean her room. I have to force her to do her homework and man, I honestly think that someone spilled super glue on the couch because her ass is stuck to it. Please tell me someone can relate. This shit is gonna drive me nuts. Or, am I already nuts?? She thinks I am. Maybe she is right.

Yesterday I told Princess that if she chose to leave her dishes and not put them in the dishwasher then she would not be able to eat again until she hand washed the dish. That sounded reasonable to me. Her, not so much. She looked at me and said,"Wow Mom, that's harsh!!". Harsh, she has no clue what harsh is. Harsh to wash a dish. Ummm... I'm not beating her or making her wash all of dinner dishes. I think it pretty easy. But again, her mouth does not shut. I think that is another issue lately. She has a case of Diarrhea mouth. I truly hope that is what it is because it seems as if she has no control of the shit that quickly flows out her mouth.  Everything I say to her she has something more to add. It never ends. I sure hope they continue to grow as fast as they did when they were little so she can grow right out of this stage. Then she can slow down again. Better yet, has anybody found the reset button?? Even a rewind button?

Well, I guess I am done with my rant and I think I really am going crazy. But... this to shall pass, I hope!!!