Bedtime...his bed not mine!

Nicky is 9 and he has never really taken ownership of his room or his bed! His "rooms" where all is stuff is are his playroom and classroom.

As a baby his crib was in my room because we lived in a two bedroom and his sister had one room and we had the other.

For one reason after the other we never insisted he get into his own bed. First, he was breastfeeding he was sick and I wanted to keep an eye on him, and he struggled so to sleep (due to seizures and over stimulation) so we would let him sleep anywhere he could. I was sleep deprived for years and anything I could do help me sleep, was also a factor.

I was beginning to move him into his own bed when Dad began traveling. Then when Dad moved out he stayed in mom's bed because of the upset of all the changes, and my fear of him getting up and getting into something dangerous and my not hearing him. I also think I felt safest when I could just open my eyes and see him. For a long time I tried to get both kids to sleep with me :- ). Her room suddenly seemed really far away and I needed to be able to see them both. I really thought we would all be safer, all together, if something happened.

Back to Nicky and reasons to get him out of my bed. He's a terrible sleeper, he wakes up at the drop of a dime, he insists on sleeping in the center of the bed, he thinks my head is a pillow, he loves the idea of using mommy as a sensory tool so he tries to lay on me, push his hands under me, pinch me, push his hands and feet under my jammies and smacking me all combine to create our nightly ritual. Because of his seizures he wakes up in the night turns on all the lights and wants to jump on the bed and hit and scratch. This can go on for 1 to 5 hours...Yippee. Last but not least, because of his difficulties with potty training - I'm often awaken to his request "towel" because he's all wet and there are nights that I roll over just to find myself in a puddle. YUCK!!!!!!

My fears of not having him near me, all the great stuff I mentioned all combined with the realization that very soon he will no longer be a little boy (making the sleeping with mama thing on it's way to weird) and I was ready to kick him out of my bed and get him into his.

I am still afraid about what will happen when he gets up in the night without my hearing him and plays videos and the computer, leaves the refrigerator and freezer open for everything to melt, trys to cook eggs, and gets into lord knows what. However fear or no fear it's time to get him out of my bed.

The first step was just to begin putting him down to sleep in his room. I started this ten days ago. I do not lie down with him (like I did in my bed) I sit in a chair nearby and tell him to go to sleep. Much to my surprise he has done a great job and on several nights I have been able to just put him to bed and leave the room. Major Progress!

He's not staying in his bed all night yet. Anywhere between 12:30 and 4:00am he comes into my bed and if I'm already asleep I let him stay and if I'm awake I take him back to his room. One night when I was trying to walk him back to his room he grabbed a hold of the door frame and screamed "NO NO I WANT MOMMIES BED". It took me a good five minutes to pry his hands off. But I was brave and I calmly reminded him "NO, no mommies bed, he's a big boy and big boys have their own beds".

The good part about this is that right now when he wakes up he comes to my bed, so all of my safety concerns are moot, for now.

People have told me how they solved the safety issues and it ranged from locking doors, to hi tech alarm systems that go off when the child leaves the room. I know my goal is to get him in his bed all night so I have to think safety and know that I'm really not putting him in a home jail!. I do however have a typical house alarm and I do set it when we go to bed...so I will know if he tries to leave the house in the middle of the night.

My plan moving forward is to start small - or shall I say least restrictive - and hope for the best. I am going to use two of our house phones in "Baby Monitor" mode and place one in his room and one on my night stand. This way I will be able to hear him if he trys to go somewhere. Then if that's not enough I will get one of those invisible screens installed in his bedroom door and I will lock it at night. This way I can still hear and see him and he can see and hear me. It feels less like a jail to me this way. I will open the screen at a consistent and designated time every AM. I am also getting more of his favorite things in his room, so if he does get up and finds himself alone he can play games and puzzles.

Wish me luck and the ability to be consistent!

Notes to myself and others:
They can't sleep with us forever, no matter how afraid we are
Some of the solutions may seem rough, but it's not good for them to sleep with us
Take it one step at a time, but stay consistent
Don't backslide - even if he gets sick. If its really bad go to his room as a compromise
Get help from a behaviorist if it helps
Remember...puberty happens

The miracles are there if we are watching.

The miracles are there if we are watching.

I got a miracle. My guy is not non verbal, but the majority of his language is still focused around communicating his wants and needs and repeating over and over the names of things he loves (specifically video’s and animals). His interest are very narrow and it’s hard to expand them.

Tonight I was putting him to bed and I turned on the American Music Awards, very quietly because I wanted to watch. A few minutes into putting him to sleep I turned the volume way down, almost silent, and he jumped up and said “No, mommy volume up”. The song playing was a country tune by Rascal Flats. I used the opening to ask if he wanted TV or did he want to hear the song? He replied “I want to hear the song”. Oh my gosh my kid likes the Rascal Flats and country music! All I can say is Yahoo!!!!!!!!! and I'll be getting some more Rascal Flats music in the morning :-)

This is not the first time Nicky has surprised me by letting me know that he was listening. I often listen to meditation CDs. One of my favorites are by a woman named Belruth Naperstak. Not an easy name. One night I was putting Nicky to bed and he said "Nap Per Stack" and I hesitated. Then I said "What Nicky" and he said Belruth Naperstack. He had been tuned in to what I was listening to when I thought he was fast alseep. Now he listens to Belruth almost every night to relax and go to sleep. It's just amazing what our kids pick up and tune into.

Note to myself and others…

You never know when our kids will share, so keep listening

Keep exposing them to what we get exposed to, and see what catches on...don't think we know what our guys will like. Let them decide.

What Therapy/Intervention is best? Is there a "Gold Standard" for Autism Treatment?

What Therapy/Intervention is best? Is there a "Gold Standard" for Autism Treatment?

I get asked this question a lot because so many of us really do not know what they should be asking for (or insisting upon) and what is agreed to be a "Good" program. The gold standard is based upon where the most "data" has been collected and recorded that proves their impact on people with ASD. Other therapies that have helped children including Floortime and RDI should not be eliminated because they are newer or lack sufficient data by "Gold Standard" measurement, however you may not be able to get them funded.

The experts agree that a successful Early Intervention Program, designed to insure the best outcomes should be intensive and consist of the following:

Speech Therapy - One on One, 2x per week for 50 minutes each session
Occupational Therapy - One on One, 2x per week for 50 minutes (with heavy equipment as needed)
Social Skills - Small Group Settings 1 or 2x per week with typically developing peers
ABA, Applied Behavioral Analysis One on One 25 to 40 hours a week {AKA Behavior Modification Intervention including: Discrete trial training (DTT), Pivotal Response and Teach methodologies}

The other really really important thing I learned - the therapy is only as good as the person delivering it. It was critical that I did my homework, so I could understand what the intervention was supposed to look like and what I should expect. Because sadly, over the years agencies have sent "therapists" to work my son who had little or NO experience working with ASD kids. It took me a while to gain my confidence, but once I understood, I had no problem sending back an unqualified therapist. And when I would feel bad about asking someone to leave my case, I would just remind myself how critical every moment of Nicky's therapy is, and how it was the ONLY KNOWN THING THAT COULD CHANGE HIS OUTCOME - SO I COULD NOT AFFORD TO WASTE A MINUTE!

Services - What's Available? Who Provides Them? How Do We Get Them?

The world from diagnosis to getting the intervention a child needs can be smooth. However, most parents do not consistently have that experience. The best solution is to educate ourselves as much as possible about the process and what is available so we can be prepared when others are not. Here's a brief rundown starting with getting the diagnosis (which determines services) and who provides what.

Note regarding services providers: Much of this information is based upon how services and supports are delivered in California. All states provides services for early intervention which can be located on line. All states provide services through the school districts, departments of mental health and the departments of parks and recreation. because of it's regional center system.

Note regarding Therapy, Services and Supports: There is a "Gold Standard of Therapy/Intervention". The Gold standard for young children with Autism provides these therapies weekly: Speech Therapy, Occupational Therapy, ABA (i.e. DTT, Teach, Pivotal Response) and Social Skills Training. SEE GOLD STANDARD FOR MORE INFO.

1. Get a diagnosis - This can be done at Autism Clinics' (UCLA, UC IRVINE, USC), Regional Centers, Schools, Developmental Pediatricians or Psychiatrist. Just make sure they have experience diagnosing children on the spectrum. .

They only need to call and ask for an evaluation. To find the Regional Center in the San Gabriel Valley (closest to them) just visit DDS.gov - Department of Developmental Services.

I recommend getting two diagnoses and in the case of diagnoses obtained by a source other than regional center or the school district the family needs to request treatment/therapy recommendations in writing. This can help avoid any confusion and disagreement about what services the child requires.

2. Get services based upon eligibility - If the child recieves a diagnosis of Autism the next step is to get a educational/treatment plan in place. This plan will primarily be funded by the regional center and the school district. The family needs to request an IEP* meeting from their local school and IPP from their local regional center.

In each of these meetings the conversation will be about what services the team believes the child needs based upon his diagnosis. All services provided by the school district and the regional center are FREE to families.

During these meetings the team (family and professionals) will determine what assessments need to be done for the child to determine his/her special needs and level of care. Both the schools and the regional centers get assessments done on the child before funding therapy or special education services.

3. What services and placements are available and who provides what?

Speech Therapy (Regional Center and Schools)

Occupational Therapy (Regional Center and Schools)

Physical Therapy (Regional Center and Schools)

ABA, Applied Behavioral Analysis (Regional Center and Schools

Social Skills (Regional Center)

Floortime (Regional Center)

RDI Therapy (Regional Center)

Music Therapy (Regional Center)

Art (Regional Center)

Infant Stimulation (Regional Center)

Recreational (Regional Center)

Respite (Regional Center)

Aids for Recreational Support (Regional Center)

Swimming (Regional Center)

Special Classroom placements with different levels of support (School District)

Non Public Schools (NPA’s) (School District)

Private Schools (where schools reimburse parents) (School District)

In school behavioral support (School District)

In school aids (School District)

LRE (least restrictive environment teacher) to modify/adapt curriculum (School District)

Resource Teachers (School District)

Auditory Processing (School District)

Note: before age 3 all services are provided by the regional center. At age three the regional centers and the school districts share the supports.

I have listed all services here that I have known to be available. This does not insure that each school or regional center will or can provide them. This is the challenge each family has to face. This is also why it is important to get a diagnosis and therapy recommendations from a professional outside of the school or regional centers when possible.

Again, these services are free to families.

4. How do I fill in the gaps?

There are times when we may be getting all that we need for our child and times when we are not. In the times when we are not we have to fill in the gaps and locate services at our expense. When it comes to recreational supports there are some national programs that all families can tie into that are low or no cost. For example:

Special Olympics

Department of Parks and Recreation

AYSO Soccer League

Scouting

I find connecting with other parents in the area to find out what they have done to be the best resource, as each community is different.

5. Can my Health Insurance Help?

Check to see if your insurance has “mental health/behavioral health” coverage. Depending on the state you live in and your insurance carrier, you can obtain Speech Therapy, Occupational Therapy and Behavioral Therapy. Because these services are covered by the “mental health/behavioral health” portion of your plan it’s important to see if you have this coverage.

*IEP - Individual Education Plan. This document is the legal contract between families and school districts that determines what special services or support the child needs. Anything not listed in this plan, will not be provided. So this plan is very important. You can look up information on the IEP and it's obligations under FAPE (Fair and Appropriate Education) on the internet. There's lot's of information regarding your legal rights related to this document and the IEP process.

When There's No Cure What Do You Do?

If there's no cure what can we do? Wait and continue to love our children, because Autism is not who they are, it's what they have. While we are waiting we can do out best to learn as much as we can about ASD, we can enroll our children in clinical trials (at respected universities) and we use our knowledge to get the best help available to us. We can connect with groups like Autism Speaks and help them, help us by supporting them in whatever way works for us. We can make sure our politicians and community leaders keep this topic on the front burner. We can continue to be a part of this amazing network on parents who have single handedly put Autism Awareness and finding a cure on the map. We can know that what matters is that we DO. We do the best we can, because we can. We do because, what else is there? We do because it's what's right.

Note to self and others:

1. Do everything to enjoy my life and my children - just like they are - because all we have is right now.
2. Put notes on calendar to check important autism websites monthly for new info.
3. Write letters to my congressman/woman about funding need for children and adults with ASD.
4. Find ways to make a difference everyday, choose to help somehow, someway, someone.

4. NEVER GIVE UP HOPE

What about the "typical kids" the siblings?

What about the "typical kids" the siblings? Experts say the siblings are affected in many ways including:

1. They sometimes feel guilty that they are okay.
2. They sometimes feel like they are responsible for their disabled sibling
3. They sometimes feel stress because they know the adult they rely upon, the care giver, is under so much stress.
4. Often they begin making life plans based upon knowing they will have to be responsible for their sibling, a massive responsibility for a child to ponder.
5. They sometimes get angry and act out because they are angry about having a special needs sibling. Or they act out just to get attention.

On an up note....many siblings turn out to be professionals in the field because they have lived it.

Just after Nicky was diagnosed I met a wonderful pediatrician, Dr. Leslie Richards, who worked at our local regional center. When we met I expected her questions to be about Nicky, but instead they were about Evyn. She really wanted me to begin thinking beyond Nicky and his diagnosis to thinking about how not only was Nicky's life never going to be the same, but neither was my daughter Evyn's. She talked about her grown brother with Autism, for whom she now provided the primary support. She really wanted me to be clear that Evyn's view of the world would forever be changed because she lives with a severely disabled child. I did hear her and I quickly located what are called "Sib Shops" and enrolled Evyn in the program. In these programs the counselors provided lot's of fun activities and encouraged the children to talk about their siblings. They worked very hard to create a fun atmosphere where they could talk if they wanted to, or just listen and have fun. There were always some kids who wanted to talk and others who did not, but in the end whether the kids were listening or talking they heard the same thing "We all have special needs siblings and we are all surviving" and "No matter how bad it seems at your house it was worst someplace else". These messages really did seem to help Evyn feel less isolated and I'm really glad we were able to get her involved early.

Over time I have been able to stand back and see for myself how having Nicky as a brother really has affected Evyn. The contrast in their lives is sharp and not matter how much she understands, it does not make the challenges go away.

FACT: Nicky gets so much attention ALL THE TIME.

REALITY: This is what I hear from Evyn (sometimes verbally but mostly without words)

1. Therapists come in and out of the house to help her brother. They spend hours praising him for every successful task. " Yes Nicky, Excellent Nicky, Good Job Nicky" - and she can barely get help with her homework.

2. He always has to have the attention. He's always first. I wish he would go away. Yeah, he can't be left alone because his understanding of safety is almost zero - so someone always has to be with him. I hate it, he always gets the attention.

3. He has a super restricted diet so we always have to pick special food for him. The restaurants we go to depend on him, the trips we take have to consider him, the places we avoid...are becasue of him. What about me and special food for me....Nicky Nicky Nicky it's all about him.

4. Mom is so into "Autism" not only does she spend more time caring for Nicky but she spends so much time learning and helping others...Nicky Nicky Nicky....Autism Autism Autism. Enough already.

5. Mom can't just leave and hang out with me, everything works around Nicky's precious schedule. Nope, we can't go now Nicky has theraphy, No we can't go now Nicky is having a bad day, No you can't sleep in the bed with me...Nicky doesn't feel good...Nicky Nicky Nicky.

Knowing this does not take it away. I knew this so I tried to not ask Evyn to look after her brother even as much as her typical peers look out for their siblings. Until we became a one parent home I was able to do this, now Evyn has to help and she is the best therapist in the world. She knows her brother and she does not take any stuff from him!

I talk alot to Evyn and I know intellectually she understands and I know that it is just not easy feeling like number two, even when you love your brother and you know "it's just he way it is".

Notes to myself and others...

1. Try to get 20 minutes a day in with the typically developing sibling every day... doesn't matter what you do.

2. Locate a "Sib shop" in your area and if you can't find one, create one.

3. Have friends and other family members take the either of the children out, alone. They each get one on one time that way.

4. Let family and friends help. Invite people over and create opportunities for the atmosphere to be light and happy and not focused on care giving.

5. Show the typically developing sibling that you are taking care of yourself, so they don't have to worry about you too.

6. Take care of yourself and treat yourself, so the typically sibling does not become a martyr. Showing our children that we are important and not just caregivers teaches them that it's okay to take care of themselves.

7. Try not to take everything so seriously

8. Laugh ALOT at yourself and everyone...togetehr as a family.

When to take chances...this week it was a spinal tap

No cause, no cure, more questions that answers and we all are desperate to help our children. In a world where there is no "protocol" no single treatment plan for our children we are left to learn for ourselves. I am always asking my self "What chances should I take", "Who Should I listen to", "What therapy or drug just might be the magic bullet".

We all want to cure our kids, we all want our kids to live a full life and we all know that right now no one can promise us that...so when something comes along and people are promising results, we want to run and jump right in. Sadly, we have to be careful because like anything there are going to be some "Snake Oil" salesman -even ones who believe in their oil - praying on our desperate need to help our children. I've learned to listen to my gut and really think about what is being recommended and does it really sound like it could help my guy, and shut off the part of me that just wants to try anything to make him better.

We each have to make our own choices of what to try and what to avoid. I have tried intervention, dietary changes, bio medicine and traditional medicine. I have remained open to trying anything that I am certain will not harm Nicky. Which means that I have passed on some treatments. I have also had to learn the hard way, that like many other things in life, it may not be the treatment itself, but the person administering the treatment. Because much of the alternative care we have been driven to pursue is not regulated, it becomes totally up to us to pay careful attention to who we are dealing with and choose our teams wisely.

After 7 years of trying different things I have finally settled in with "my group" of professionals I trust. Most of whom have children on the spectrum, so they are heavily invested in helping our children. One of these people is Nicky's neurologist. He has an excellent history with children with developmental disabilities and he is a good cross between conservative and progressive. He continues to be involved in both his practice and research. He is not opposed to trying new things both traditional and non- traditional once he is assured that his recommendations will not harm our kids. Because of his open mindedness I routinely forward him information I find about new studies, new treatments and ask for his thoughts. This has been very helpful in creating an open dialog and letting him know that I am involved in Nicky's care. It also helped me to build trust in him, because if he never responded or tossed out all new idea's I would have known he was not the doctor for us.

So we have tried lots of new things including:
Namenda - an altzheimers drug to improve brain function
Melotonian - an herbal sleep supplement
Turmeric - in hopes of reducing inflamation

He does not believe in the whole "bio medical" intervention as being a cure for our children but he is not opposed to parents trying the parts that will not harm the children (mostly dietary restrictions and supplements).

This week I took Nicky to see him and when he said that perhaps we could get a better look at how to best treat Nicky by doing additional tests: Abdominal X ray - to look for abdominal blockages and a spinal tap I agreed. I'll let you know what we learn.

Notes to myself and others:
l. Don't hesitate to ask lots of questions - because everyone is guessing at this point.
2. Work with professionals who has a long history of helping our children.
3. Research up the Doctors and research new treatments before jumping in.
4. No matter how great something sounds...always use my common sense and ask questions.

I Can't Let Others Tell Me What is So About Nicky

There is a word I have come to fear. A word that sends such intense emotion through me it's hard to pin point it to any one feeling. It's a combination of failure, loss, and hopelessness all rolled into one. The word that does this to me is "Plateau" when people say my son has reached/hit a plateau all I hear is that they are walking away, they are giving up, they see no more opportunity for him to improve, they are throwing in the towel and any hope I hold for him continuing to make progress is naive and I should abandon my denial and deal with reality - this is it for him. I know it's not true but every time I heard it I have to fight off my fears and remember what I know.

I heard that word again today and I felt those feeling again and they feel awful. I cried and I sat in the feeling and then I got back up and remembered what I know is true. They don't know Nicky like I know Nicky, and he is only 9 years old, no body knows the totality of his future. I know he has enormous potential, I know he has not plateaued in his comprehension, I know this is the opinion of one person.. Most of all I know that even if she is right - and he has plateaued in this area SO WHAT!!!!!!!!!!!!!!!!! IT'S NOT THE ONLY AREA OF HIS ABILITIES. HE IS NOT A ONE DIMENSIONAL PERSON WITH ONE ONLY SKILL THAT DETERMINES HIS QUALITY OF LIFE.

Imagine if my mom had broken down with my Algebra teacher said, she just doesn't get it. Duh! No we don't all get everything and we don't all have the same abilities but we all fit someone where. There is a special place for each of us.

Nicky may never be great at auditory processing and he may always think "are" and "old" are the same word. Not terrific, but not horrendous either. He does so many things I can't do. He know's when I'm within 20 feet even when I have not made a sound. He recognizes genuine people immediately, he remembers everything that has been said to him about any animal on the planet since he was 2. He can explode with the most exuberant and contagious joy I have even had the pleasure of witnessing. He is so direct about his anger - it can be hard for me to have a straight face. He would never do anything to ever intentionally hurt anyone. And every day he teaches me to live in the moment because he never brings yesterday's stuff into a new day.

Notes to myself and others

l. Our kids are not the same, they are different. Our job is to appreciate the differences.

2. Focus on the gifts that come from the differences and not the perceived loss's

3. Remember that God put these children here and he had a reason, maybe they are the angels sent to teach tolerance.

4. Maybe God put these children here to teach us of how many more ways people can think and do things... to expand our understanding.

5 . Nothing is impossible

6. Only god will decide his future

7. I have faith in all that can be

8. What seems true today, may not be true tomorrow, I have to keep doing my best.

No Cause, No Cure?

As of today: Doctors and scientists do not know what causes autism. They also do not know if what we currently call “autism” is one disease or disorder or several different conditions. They do know that the immune system is involved and that some, if not all autism has an environmental trigger (vs a single autism gene). They do know that inflammation is a key factor in the illness.

They don't know why it mostly impacts boys or why the number of children impacted has reached epidemic proportions. At the same time, more money and time is being dedicated to answering these questions and finding a cure than ever before and answers are beginning to emerge. However, they don't have a cure (which means something that eliminated the illness on everyone) for Autism, at least not yet.

Some families have been fortunate enough to minimize the impact of autism on their children through Bio Medical or Therapeutic intervention (or a combination of both) and that is a wonderful thing!

However, some children making remarkable progress as a result of these interventions, does not mean THERE IS A CURE FOR AUTISM.

Diagnosis Disaster – Getting the Proper Diagnosis

Today a parent told me they had seen two professionals who had ruled out the diagnosis of autism for their 2 year old son. Their pediatrician had said don’t worry, it’s just too soon to be concerned and the results of an “Over the Phone” intake with a local early intervention agency – which included the following question “Does he line up cars?” – confirmed that he was not on the spectrum.

The parents knew something is not right with him developmentally. He is two and has routine tantrums that last more than 20 minutes, he has great difficulty with transitions, speech and other behaviors that baffle and exhaust them. Armed with the knowledge that something is wrong they were able to get speech therapy, but no diagnosis and no plan for addressing the behavioral issues.

I wasn't surprised to hear this because so many families have this story, or a version of it. It's important to know that all professionals and doctors do not know how to diagnosis kids with autism spectrum disorder (ASD). It’s important to know that only a small percentage of pediatricians use a comprehensive developmental diagnostic tool for children, there is no one tool used by all pediatricians/doctors and most practicing pediatricians do not have expertise in diagnosing ASD, especially in young children. If a child is not showing the classic signs of autism, like head banging, hand flapping and noises instead of words they can go undiagnosed. I thought I had a terrific pediatrician who could tell me everything about my child, until I called and told her he seemed to not hear me (even though I knew he could hear) he wasn’t responding when I was called his name and the only thing he wanted to these days was crawl out of his crib in the middle of the night, find the VCR and play video’s. I was worried and she said “Donna I know you, he’s just spoiled”. She was not a bad pediatrician, she was simply not trained to ASD because until recently only psychologists and psychiatrists had an understanding of the disorder.

The process of getting an evaluation for a developmental disability is counter intuitive for parents. In an evaluation the questions and our answers could make the difference between getting the right help for our children or getting nothing or delaying important intervention. We really have to pay very close attention to the questions used to determine diagnosis for our children. This is not the test where we help our child by painting the best possible picture, this is the test where our kids will get the help they need if we expose not their strengths but their weakness’s. We need for the examiner to know about the worst days and every little developmental thing that just doesn’t seem like the other kids. If we paint an optimistic parent picture filled with possibility and trying to prove our child is okay, our child could lose out on critical early intervention.

I remember being asked “Does Nicholas show interest in other children?”. Yes, he has shown interest in other children before, but no he does not show interest in other children the way I see other kids at the playground. If this were a yes or no question I would have to ignore my instinct to see the best in my child and say “no”, because they are not trying to find out if he ever did it, they want to know if he does it all the time. I was also asked if he lined things up, a very common trait among children with autism. I knew that even though he did not line things up, he constantly rewound his video’s and that was a version of the same thing, so I said “no” and clarified but he does….

Just before Nicholas’ first evaluation a friend of mine, who also had a high functioning child with ASD, told me “Keep Nicholas up all night the day before your intake. Because he will be tired he will be much more likely to act out. The last thing you want to have happen on examination day is for Nicky to have a great day and they think he’s okay or only see a little of what you see everyday. That’s not good they need to see the behaviors that got you there and no sleep usually helps with that”. I took her advice and it helped Nicholas was frustrated and in the small time allotted for the examination, he showed them exactly what they needed to see to confirm he needed help.

Notes to myself and others....

l. Get an evaluation from a trained professional, not a general pediatrician

Locate a developmental pediatrician, a psychiatrist or local autism clinic and request an evaluation.

2. In the future if anyone is going to consult, diagnose, advise you regarding your child make sure that they have the experience diagnosing children with developmental disabilities’ – and that they are presently up to date with the new information regarding ASD.

3. Before any evaluations go online to the CDC website and review the developmental guidelines they have that posted. Reading this information first will give you a chance to see important milestones and think about your child’s progress before an evaluation. It will help you to be confident and prepared to ask questions or better answer their questions. www.cdc.gov/ncbddd/autism/actearly

4. Make a list of all of your concerns before your evaluation and share them with the doctor or intake specialist. Don’t worry if they seem to fit, or make since to you, just write out everything that concerns you. The specialist will determine which merit further investigation and which are just normal kid stuff.

5. Follow your gut, no matter what the professionals tell you until you believe you have found the truth.

6. To help our children get an honest evaluation we will have to go against what we all do naturally as parents, paint the best picture of our child, and explore their weakness's

Nicky an airplane pilot...a good day!

We had a great day yesterday. We attended an event hosted by a wonderful a group called Challenge Air. The event called "Flight Days" was for kids with special needs across the country. I received an E mail saying they were going to be hosting their first event in our area and that interested families should sign up asap. I didn't know anything about the organization but it sounded good so I sent off my application. I was very interested because Nicky is a real dare devil he loves spinning, jumping, roller coasters, things that spin, the Tower of Terror at Disneyland he loves anything that is intense movement. He has no fear and I knew he would love being in a small aircraft. A few weeks later I heard back, that we were in and that 3 members of our family could show up on November 2nd ready to fly!

We arrived signed in, weighed in, Nicky got a good bag complete with a cool Challenge Kids t-shirt and we went to our orientation. I learned that some 18 or so pilots has come there to donate their time and planes to take the kids for rides! No small deal considering the cost of jet fuel these days. Forty or so minutes later we met our pilot and saw the plane we would be flying. The pilot George Jerome was very nice and when I asked him "How did he get involved" he said that his daughter is very active in the community and she had asked him to do it. He went on to say it seemed like a great idea and he was happy to volunteer. Next thing I knew we were getting on the the plane and a very surprised Nicholas was being strapped into the co-pilot seat, instead of being herded into the backseat. He WAS SO EXCITED - and so was I. The weather was warm, the sky was clear and it was a perfect day. Up we went with Nicky looking like he was going to burst with joy as we kept reaching his neck to look down and around as the plane went higher and higher! When we began to level off the pilot said "Nicky do you want to drive?". Nicky who is not super verbal said "YES" and he took the Yoke. This is when my joy mixed with a little nausea as Nicky bounced the plane around. But it was still all good Nicky was happy, the pilot was happy and we were having an experience of a lifetime.

When we got of the plane we entered an open area where volunteers (many of which were folks from Washington Mutual) were helping kids get into different types of simulated aircrafts that made noises and bounced around, while excited parents took pictures. There were vendors with free food - including Nicky's favorite "In n Out" handing out lunches. Nicky had a snow cone, burger, chips and soda all provided for free to everyone and then we went to a craft area where Nicky painted a little airplane as a souvenir of the day - which almost made me cry. Why? Because usually Nicky is not thrilled to paint or do a craft. On this day not only was he very happy to do the craft but he wouldn't even let me touch his paint brush. He was clear that this was going to be his project, he knew just how he wanted his plane and he was determined to do it himself. Proof positive that he had been wonderfully impacted by this special day.

This was an amazing opportunity and the atmosphere was filled with love and excitement. Please look up this group and see if they are going to be in your area if this is something you and your family might enjoy. For me I am always looking for things that Nicky and my Daughter can do and both have fun and as she gets older they are few and far between - this was one of those days that she could have fun too. Here's their link...www.challengeair.org

Have fun!!!!

Notes to Myself and others

* Stay in touch with this group to find out when they will be back www.challengeair.org

* Take a camera so you can record any special outings, then make an instant scrapbook so you and your ASD child can look at it and talk about it immediately afterwards and for days to come. This will help build vocabulary and serve as a valuable tool in linking you to other similar activities. Fill the scrapbook with photos, brochures, ticket stubs, menus...whatever will ground your child to this event.

* Ask everyone you know -- caseworkers, fellow parents with ASD kids, your child's O.T., etc., about activities for kids with ASD.


* Try to find new things to do that can expand on the activities he loved! I know I'll be visiting the airports more and maybe even getting him some toy airplanes, airplanes to paint, books about airplans...we'll see what he likes.