My experience with Adderall

Yesterday was my sons first day on Adderall to combat his ADHD. I hate the thought of having those pills in my house knowing how many people in this area would break in and steal them without thinking twice but i did what the doctor said to do.

We started the day out like any other.. Only to end it with him showing very very odd side effects. He was twitching, tongue thrusting, involuntary body movements, HUGE PUPILS, rambling speech, inability to blink, manic episodes followed by severe depression and crying. Irritable, anxious, very aggressive. So me being the mom and the nurse i looked up the drug side effects. As my shitty luck would have it.. he had all of the “rare and unlikely” side effects.. which are considered serious. So i pulled him off the pills this morning, called his doctor and to my surprise she agreed with my decision. He has been pulled off of them. In a year or so we will try again, but some children just can’t handle them they way they should at certain ages. Some children do just fine at 4 years old.. some take until they are 7 or 8 to tolerate the drug properly.

So.. I’m back to square one with his ADHD treatment but i would much rather it be like this than him be how he was last night. It scared me. I made the call to stop his meds, and i’m glad i have the knowledge that i have from school to have recognized that those symptoms were not normal.. and should be looked out for.. And it felt great to have his doctor tell me i did a good job and made a good call.
I am leaving home shortly to take the pills back to the pharmacy.. I want them destroyed.. I don’t feel they should be in my home.. and i want them disposed of properly before someone gets ahold of them or gets word that i have them.. Stupid people do stupid things with adderall.

How was your Thanksgiving?

I decided to write again and bring up another subject that plagues many parents with autistic children. Food.

As i read all the information medplus had to offer on this subject it came to my attention that they failed to consider children with autism in their explanation. According to them the behavior of food aversions is temporary and short lasting. My son has had food aversions since he was about a year and a half old, being 5 now i would have to say that’s far from temporary.

So for your educational pleasure i will post something that other parents dealing with this problem will better understand. Feeding problems: it is a no brainer that these children have feeding problems and gut digestion problems, think about the connection they have to food…not a pleasant experience! Psychologically, feeding is a bad time for them… If you gag and get sick every time you eat you’re less likely to ever want to eat again.
Common problems: limited number of foods, texture preferences and aversions, unusual mealtime habits (self stimulation, has to be in a certain container, has to be from a certain restaurant, rituals)

How to help:

Get them comfortable with the environment first. Sit at the table and color, play, watch the noise level, the stimulation, etc.

Gradual progression (put the table in a more comfortable environment)

goal to sit for longer periods at the table, without food, gradually add in things such as utensils, plate, cup, then last is food! Don’t overwhelm or overstimulate them at meal times, gradually add in everything…

Reward for food acceptance, sitting at the table, touching foods for fun, etc.

Play time with foods is essential..

Let the child be in more control of the situation (learn to feed themselves and be in control)

This is where the importance of not giving parenting advice that isn’t solicited from an autistic family comes into play. If you have an autistic child you know what it’s like, but those mothers that give out advice without having any idea what we as parents of these children have to deal with. Reading it in a book isn’t the same as living with it, every autistic child is unique. Many parents say “just let them go hungry, when they get hungry enough they will eat.” That is not true with Autistic children. A therapist in Denver is being sued because she recommended that the mom take away foods and the child should eat what everyone else is eating. The child did not eat for 3 weeks, in hospital for renal failure. We tried this with my son after my family attacked me for letting him eat what he wanted. I fed him every single meal, 3 times a day and snacks that he didn’t prefer. His therapist also took him off of the medication that helped him eat. My son did not eat for 9 days, and ended up in the hospital with severe dehydration and a systemic infection from malnutrition. DO NOT GIVE PARENTING ADVICE TO A PARENT OF AUTISM!! ESPECIALLY IF THEY DON’T KNOW ENOUGH ABOUT IT TO DISAGREE WITH YOU.

My best advice for any parent of autism, dealing with food issues would be to seek out information online and from your doctor, and remember that the doctor is NOT always right.

For more information please visit : http://www.developmentaldelay.net/page.cfm/272

What a week

So if you have been reading here you know a little about my fight. I had requested characterized write ups be done by the two teachers of the two classes my son is currently in. I wanted to know everything about his day, every little problem needed to be detailed and written. These write ups were to be sent home every friday for me to put with the rest of his behavioral assessment that will come into play during my fight against this school, with the board of education by my side.

I started to understand which teacher was the problem, which is the same teacher that my son refuses to be around and the same teacher that wants him kicked out of her class. She failed to follow through with my request and sent absolutely nothing home with my son this week. I have to admit i wasn’t surprised, i expected her to not do what was asked of her. The other teacher went above and beyond, sending three pages of detailed accounts of his behaviors home for me to not only read but also to compile with other paperwork to aide in my sons educational success.

I knew i was in for an uphill battle with this school district that was made very obvious when they trashed my son and argued about money rather than worry about my sons education.

We are now onto phase two of the plan so we will see how it works out after this week. His testing should nearly be done it takes about two weeks to complete.

Just an update on my fight. Those of you that wish to share your fight please leave a comment as long as you want and i will post it. It doesn’t have to be about autism, it can be ADD ADHD, or just a school system that failed your child.

Asperger’s Disorder

Many times i have been asked “what’s so different about Asperger’s Disorder?” It took me at least a year to fully understand this disorder enough to be able to answer that question without sounding stupid.

In the last few years there has been a fast uprising in Asperger’s Disorder cases in the united states. Many children that used to be listed as ED, or Emotionally Disabled have now become Asperger’s Disorder. I myself as a child was diagnosed as Emotionally Disabled. I had trouble learning to control how i felt and would often cry for absolutely no reason.

As a child i was extremely smart when it came to certain areas, similar to Austic spectrum disorder children i had an affinity for a specific subject and was above most of my peers in this area. What was my area? Music. I taught myself to play every instrument in the high school band by ear. You name it, i can play it. Trumpet, Coronet, Bflat clarinet, C clarinet, bassoon, picallo, flute, Alto saxaphone, Saprano sax, Drums, the list goes on and on. I think the only thing i cannot play is the piano because every piano sounds so different depending on how old or new they are. I can play piano don’t get me wrong but i’m not as quick to pick up on the subtle differences in the tones.

I guess i got the short end of the stick, looking back i ask “why couldn’t i have had an affinity for math? Sheesh i suck at math!!”. lol..

My son on the other hand is further along than just Aspgerger’s Disorder, he is in the process of being rediagnosed. That is the trick with the Autistic spectrum, it’s forever changing. Some children start out with one diagnosis but as they miss milestones or their personality doesn’t adapt to their age as they grow it becomes obvious that maybe they are a little further down the spectrum. The social interaction is the biggest dead giveaway. Not all children with forms of autism will be non verbal, some will be very verbal but speak in their own special language. Autistic children are only 2/3 of their actual age, so while they grow it becomes easier to change the diagnosis. If your 5 year old acts more like your three year old that is something that doesn’t go unnoticed.

Asperger’s is different in the way the symptoms appear and the symptoms themselves. You will never learn all there is to learn about Asperger’s from a book. Each child is unique in their symptoms and triggers of meltdowns. The best way to learn more about it would be spend some time with a small group of children that are on the spectrum.

Some of the common signs are:

Flapping of the arms and/or hands.

Odd body movements

Repetition ( movements, speech, actions)

Food jags and aversions. (Autistic spectrum children are very sensitive to the textures of things, be it food, clothings, ect.)

Sensitivity to sound or light.

Lining up objects

Obsessive behavior with things such as numbers, certain toys, ect.

The biggest problem with Asperger’s Disorder children is TRANSITION!!

They do not transition. You and i can just get up and go but they cannot. Their day’s must be planned for them and in most cases visually charted for them to see. They do not like to stray from their own set routines. Any change in the above triggers can cause what are called “meltdowns”.. Extreme expression of violence, repetitive behavior, crying, these children can be dangerous without realizing they are. It is not their fault, they become extremely impulsive and have no control or understanding of right and wrong.

If you know a child with an Autistic Spectrum disorder please spend a little extra time learning their routing. These children are not “weird”, They are just people that see the world differently than us. Put yourself in their shoes and look through their eyes at something, you might be surprised at what you see.

In closing, some do theorize these children understand things better than we do which is a complete mental overload for them. The complexity of the world is simple to them, but the simple tasks just go right over their heads. That is theory, nothing to this point has ever really been proven about these disorders. But i have to say the world through the eyes of autism is beautiful, but harsh at the same time..
Try and understand the parent and PLEASE do not give parenting advice.. Unless you have a child with autism, you don’t know what it’s like.. Millions of parents agree lol..

Welcome

I would like to welcome everyone ! I started this blog in an attempt to reach out to some other parents going through what i am going through with my oldest child. So here is a quick rundown on me.

My name is Bekki. I am the mother to two beautiful little boys Dakotah and Declan. Dakotah is 5 years old and was diagnosed with Aspergers in 2007. He was most recently diagnosed with ADHD as well, and there is a possibility he may be more moderate autism than mild.

I have been fighting the school system to learn more about these children before they start to judge them and kick them out of school.

For the parents that do not know a lot about PDD and what it is i will give you a quick lesson.

The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns. Autism (a developmental brain disorder characterized by impaired social interaction and communication skills, and a limited range of activities and interests) is the most characteristic and best studied PDD. Other types of PDD include Asperger’s Syndrome, Childhood Disintegrative Disorder, and Rett’s Syndrome. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common. (http://www.ninds.nih.gov/disorders/pdd/pdd.htm).

This illustration shows which disorders fall under the catagory of PDD.

 

Today was a day filled with many challenges. I went up against two school districts, and the board of education in an attempt to protect  my son from being sent back a grade because his teacher was ill prepared for him. These children cannot simply be haned off and ignored. Through constant monitoring and programming they can easily become something greater than the nay sayers would ever have imagined. My son has been singled out by his school because he is different, no one knows how to handle someone different. Through phone conferences, lots of messages and call backs i am slowly reaching my goal of getting his personal aide put in the classroom with him. These aides are extremely expensive to the school district and are fought tooth and nail so they don’t have to get one.

 

I will give some quick information on where to go if you feel that your child is not getting the education and treatment they deserve.

Contact your local alliance for families, contact the board of education for your state. Get in touch with the school directly and request a new IEP be done, in which you will intentionally implement difficult tasks for one teacher to perform. The odds of them giving you the aide your child deserves are higher if you overwhelm the teacher. The tasks must coincide with your childs needs, an example would be my sons need to transition safely and in a healthy manner. To aide in his transitions i am asking the school to implement structured to do lists that are visual illustrations of the days comings and goings. These will be velroed to one board and removed to a DONE board when the tasks are complete. Implementing egg timers during tasks to show the child (my child) the time span each task or activity will last, when the timer goes off you switch to the next activity or task.

These things cannot be done with only one teacher for 20 students which gives me the upper hand in getting him that aide. One school district is for it, the other is against it and neither want to pay for it. There are many things you can do to enforce your childs right to the same education other children are getting. Don’t let them single your child out because he or she is different! Education knows no color, race or mental ability level.

 

I will update as time passes feel free to leave comments or questions.