Autism As A Whole

I think I want to use Fridays to post an old but still wonderful post. What is your opinion of this. Many times I post more than one post on a day and sometimes they do not get read so this will be a day that these "Forgotten Posts" shall be revived!!! If you think we should do a link up let me know cause I can set that up. I think while we are at it we can find a great picture of anything that we have not shared. Gives a visual to the post as well!!!
The post I shall revive today is:Anger Isn't Bad

Raising children can be very difficult. You learn something new everyday. I wanted to share with you a few of the hardships my family has endured in the last two years. I swear January is a cursed month and I am a little nervous about the upcoming New Year.

Five years ago I had my fourth child. I thought,"OK, how hard can this be I have three others, I can do this." Well, I was so wrong. My son is four years old and I honestly feel as if I am raising an alien on another planet. Let me explain, for the first time in my parenting time I felt completely lost and alone. I gave birth to an amazing little boy. He was 7lb. 12.9 oz. He was perfect in every way as was all my children. But he lacked connection to me. He didn't smile at me and coo. He screamed constantly and I was entirely clueless. After about a year and a half of discussing with the doctors about my son and getting nowhere I started a video diary.

This opened the doctor's eyes to what was really going on. I was right there was a problem. On Jan. 20th 2010 my son was officially diagnosed with Mild/Moderate Autism and Sensory Processing Disorder. Life now is about learning how to cope and teaching him how to cope. I can't even imagine living life lacking the common skills needed to communicate and understand what is going on around you. Transitions are nightmares and although it is hard on me, I can't imagine how he feels. Life deals us all some tough cards and we have to move forward and keep going.

Christmas 2010

So... I did until I came to yet another roadblock. In January, which seems to be a killer month for me, of 2011 my older son Jacob was diagnosed with Tourettes Syndrome and it didnt stop there. No, that would have been easy to deal with for me. In Feb. he was diagnosed with Aspergers and in March, Cri du Chat. In a matter of three months my already crazy life got even crazier. I had to learn about things I had never even heard of and deal with a whole lot of tests and theories. I was being put to the ultimate test. Life was really throwing me a curveball and either I swerved quick or I let it knock me down. I am not the type to fall easy and this was not going to defeat me or my son.

Again as a mom I went into, what I like to cal, "Fix Mode". How can I fix him and make this go away. Many doctors later and a numerous amount of testing and I came to accept that it is what it is. This is what my son's biggest challenge was going to be and I educated him about what was going on with him. I wanted him to be comfortable in his own skin. Imagine going from a socially awkward kid that was having difficulties understanding his peers, yet seemed perfectly typical to a child who coudn't control his bodily movements and sounds that would erupt out of his mouth.

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Well, as a mom it was very hard to watch and as the saying goes it get s worse before it gets better. But... after trying medication we decided that it was not for him. His behavior got worse and he was not even abe to sleep. Some have thought it humerous when I tel them that my son was hallucinating and threw his dinner across the room cause he really thought he saw a bug crawling on it, but that is plain scary for a parent to witness. Not mentioning the fact that it creates yet another mess and is frustrating as hell. So, we dropped the meds and I did a lot of research into natural remedies. Because Tourettes symtoms are often triggered by stress and anxiety I figured I would try Magnesium.Stress can make people with tourette's tics worse, so can fatigue, excitement and anxiety, but it cannot cause someone to get tourette's. Never did I think that it would help as much as it has.

Magnesium is a natural reducer of anxiety and plays an essential role in the nervous system.It also promotes muscle action as well as proper absorption of vitamins B, C and E. Within a week of starting we could see a difference and by the begining of the school year he was a completely differnt child. Yes, he still tics but they are not as severe and definately not as noticable. There are times that it gets really bad but for the most part functionably they are much better. I also started giving him Meletonin at night which helps him sleep better and therefore he is able to cope better through out the day, and Fish oil. Fish Oil is great for brain development and Buddy does have Cri du Chat which impacts his development.

Who would have known that I would have survived all of this stress. If it was a question asked of me six years ago, I could never imagine. It is hard and we have bad days but, at least for Buddy, the hard part is over and he is a happier child. Lookng back it is my determination that got us where we are today. I pushed for answers and wanted solutions. I do wish there was a cure for Tourettes, and Cri du Chat, but my children were given to me for a reason and I will love them as they are!!!

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.