Amazing ABA therapy

Many have heard of the wonders ABA therapy does for Autistic children. Applied Behavior Analysis teaches social, motor and verbal behaviors as well as reasoning skills. It reinforces what we've been told by the experts- Autistic children don't "pick up" knowledge and social behaviors the way other children do. I have had my first ABA training session and Robbie and I sat down yesterday to "do some work". The first 20 minutes was very difficult- getting and keeping him on task. The ABA therapist at his school suggested the game perfection. I knew this would be a piece of cake for Robbie- as far as putting the pieces in the correct spot. He's always been really good with that. The surprising part was he loved waiting for the timer to pop the pieces out. It's loud and a little scary (for me at least). Robbie loved it. The reward for finishing the game was hearing the pop. Who knew. I'm interested in talking to the ABA therapist next week to get a little more knowledge on why this game is so good.- will keep everyone updated.
Another surprise was on the computer. Robbie loves the nickelodeon website. They have great matching games. We played a new game yesterday. Dora's Christmas adventure. The first round it asks to pick out the square from a variety of shapes. Next - pick the yellow oval, next pick the red circle with stripes. Robbie got 80% correct. We played 4 times. I was amazed. The struggle for him was pointing to the item on the screen. He put his nose to it- his mouth, his tongue. He looks at it - but getting him to point is difficult. We'll work on it- I'm was just really happy to see he knows the answers. Unlocking his ability to communicate is the key.

Holiday Stress

Often parents in the autism community joke that we have become more religious during the holiday season: we pray our children will behave while we are visiting relatives, we pray they will show interest in their gifts (and not just the ribbon), we pray they will sit at the dinner table, we pray they won't hit the relative who tries to kiss them, and above all, we pray that we will have the strength to politely ignore the judgments passed upon us and our 'misbehaving' children.

This is a quote I pulled off of the Autism Speaks newsletter because it is so accurate. Will the holidays be too overwhelming or hopefully pleasantly relaxing. I also relate to this quote because it makes me think about those who have an Autistic or special needs children. How can you tell if someone has a special needs child? Look into their eyes and see the tears that well up as they speak about their child. Look at the bags under their eyes and additional stress signs across their face. I have been thinking about this quite a lot lately as I think about those I know with Autistic children. The surgeon I used to call on for work- who always looked exhausted, distracted and distant. The Nurse at one of my accounts who frequently has tears so close to falling down her face. The mother in my neighborhood who can't have a conversation because she is literally chasing her son to keep him safe. My husband who has been is a pillar of strength but struggles to keep the tears back as well. And myself as I look in the mirror at the dark circles under my eyes from lack of sleep and worry. While we look forward to the holidays my thoughts and prayers are for us all. We simply want what every parent wants. A child who is excited and awed by Santa Claus and Christmas. Who gets everything he wants- even when he can not yet ask us. Who can survive without major meltdowns and sleepless nights. Is that too much to ask??

Happy Holidays!

I am getting so excited for Christmas!! I continue to melt as I watch the dynamics between Robbie and Lexi. We were driving to Walmart to do a little Christmas shopping and Robbie got out of his booster seat (bad)- but the reason was he wanted to sit right next to his sister. On the ride home I moved his booster to the middle position in the car so he could be close to Lexi. (it's a short trip) They both had lollipop's- Lexi dropped hers and started crying- screaming is probably more accurate. Robbie gave his lollipop to her- which obviously made her very happy!!



We do have our ups and downs. The ABA therapist that is working with Robbie told us he is having a hard time with his colors. This surprised us because over the summer he seemed to know most of them- or at least be able to match colors. Robbie and I played Candy land on the computer this morning- which is a color game. He did great! He knew almost all of them- and faded towards the end of the game because he was tired. For Robbie- that is key. When he is tired it is hard for him to concentrate and focus. More so than the average person. He had a great week in school this week- we were told. I think the key may be he got plenty of rest and slept through the nights.



All in all I feel optimistic and can't wait to see my 2 favorite little faces on Christmas morning!!

2 peas in a pod

One of our latest joys has been watching the relationship develop between Robbie and Lexi. She has adored him since birth- as the younger sibling adores the older one- but he has recently warmed up to her as well. He motions for her to follow him and says "come on". If she falls down and cries he will kiss the top of her head. It is so nice to watch them play together and even fight over toys as all siblings do. On the other hand- they do feed off each other in terms of bad behavior. He spits juice on the floor- she laughs - making him do it more. She'll throw food on the floor- he'll laugh- causing her to do it more. Honestly though- if it means a little more clean up on our part- it is well worth it to hear the two of them laugh - together!!!

Dad is losing it...

Well I'm officially losing it. Robbie has been doing well at school but at home is "stimming" like crazy. His "eeee" chanting is getting increasingly worse and we are noticing a new behavior coming to light. He holds his right hand in the air when he is supposed to be relaxing and getting ready for bed. He also does it anytime he is sitting or laying down. He holds it almost straight up in the air, even when he is at the dinner table.

I am blogging because I'm getting scared and I thought this would help. What the hell am I supposed to do? Why is this happening? Can I help him?????

When we first found out he "IS" autistic I was a mess. Crying on the outside even when I was at work. Lately I have been keeping it all inside and dealing with it. So I thought. Today, I feel helpless. I know my wife is upset but there is nothing I can say or do that will help her. There is NOTHING I can do to make it go away. The days I don't cry on the outside I am crying on the inside. I work in a school and a lot of great people talk to me on a daily basis about my son. They are all awesome people and I thank them for caring....BUT I don't think I can talk about it anymore.....or at least for a few days.

My poor daughter Lexi....she is awesome! Am I neglecting her because of all of the time I focus on Robbie? She needs my love too. I/we are trying to make sure that she gets all the attention and love a one year old needs. God she's a tank....and funny as hell!

Wow, I really am a mess....positives.....He says "I love you dad." He is really close to having a conversation with us. I hope that happens before he is four.

I don't know how to sign off on this pitty party so I'll just say thank you to all of you that have helped us through this so far. Peace and on to another day! I know I should be watching the Phillies but man they suck right now...could really care less.

We can't get no sleep

I know the title is not grammatically correct- but it is the truth. Why is it so difficult for Robbie to sleep? He was a great sleeper- (WAS should be capitalized) For the past few months sleep has been extremely inconsistent and sporadic. If he doesn't nap- chances are he'll fall asleep early and wake up in the middle of the night- and stay awake until an hour before we all have to get up. Lately -even with no nap he'll stay awake most of the night. Staying awake for him is running up and down the hall, talking loudly (making no sense), jumping on the bed, kicking anyone next to him, and stimming excessively. This will occasionally wake Lexi up and the cycle continues between them until early am. The neuro-ped had suggested melatonin- natural supplement to enhance sleep. I don't think it's working. Right now he sleeps- probably because he's had less than 8 hours of sleep in the last 48 hours. I just hope and pray he sleeps through the night. Mom and Dad are tired too! :)

October

I want to thank everyone for the tremendous amount of support and reading material we've received. We are still trying to digest all the information and have been reading things written by adults with autism. What an interesting and scary perspective! " Soon Will Come The Light- by Thomas McKean" Featured on Oprah!

School is in full swing now and Robbie has his routine down. He seems to love school - especially his one on one aide. We've noticed a tremendous improvement in his verbal skills. He will come home from school and tell me a story- most of which I can't understand but as I go through his backpack I generally figure out the gist of it. ( stop, drop and roll was a more recent one- hysterical!!) Robbie is also beginning to eat different foods- or foods he ate as a young toddler. This is exciting because - hopefully- I will be able to sneak vegetables into his diet.
Birthday parties are our latest challenge. For now we are skipping the non family parties. I think a hectic environment would be difficult for Robbie and even more difficult would explaining why he can't have the pizza and cake all the other kids are having.
We're also keeping a close eye on Lexi. I go back and forth with the amount of concern I have for her getting the same diagnosis. Her speech is limited- but she's very smart and picks things up quickly. She spins and looks out of the corner of her eye- but only when Robbie or someone is around to see her do it. So we wait and hope for the best!

School's in session!!

School is in full swing for Robbie. Pre-school, speech therapy, occupational therapy and applied behavioral analysis. The 3 and 1/2 hour day 4 days a week are fantastic and exhausting for our 3 year old. His communication and ability to follow direction has improved- just as it had over the summer. Once again though- his stimming behaviors have increased. Robbie will continuously move and speak some language I can not understand. He will run back and forth saying "eeeeee". He is unable to sit down for any extended length of time. ( extended length being more than 1 minute) His eye contact decreases and he clenches his fists and grinds his teeth. We were told that as some behaviors improve others may take shape. As a parent I fear Robbie will be considered the weird kid. Others may not want to play with him- or at this age other parents will not want him around. (Some feel these things are contagious- like cancer.)- please hear the sarcasm. As always my hope is we figure out the root cause of these behaviors so we can help lessen them. Is he tired? Does he have a headache? A stomach ache? Is he constipated? Bored? Anxious? Nervous? At this point it's any one's guess!

Ready for school!!

We have finally signed Robbie's IEP (Individual Education Plan) for the 2009-2010 school year. It took a lot of emails and phone calls from Rob to get them to agree to meet. We felt this should have been resolved in August- but I am hopeful that the services he will be getting will help him- ultimately be "cured".
Tomorrow Robbie will attend his regular pre-school day- Monday- Thursday- 8:23am- 10:53am- but now will receive an extra hour of Applied Behavior Analysis from 10:53- 11:53am. He will also get 1 hour of occupational therapy a week. 30 minutes with a small group and 30 minutes individually- during his preschool week. Speech therapy is every other day 30 minutes either individually or small group.
As I write this Robbie is running back and forth yelling "eeeeeeee" and Lexi is attempting a headstand. So- once again we are excited to get back to a program! :)

The importance of diet and schedule- and not being too cocky

I was too cocky today. I came home after a long week of traveling for work and was so impressed with Robbie's speech ( after a week of pre-school) I did not follow my mothers instinct. Saturday night I was so happy to spend quality time with Robbie- I was not thinking about the snack he picked from the fridge. He had helped himself to some pre-cut cheddar cheese slices. I watched him bite into it and say "Hmmmmmm". He helped himself to 2 additional pieces. My hope was- he is not like all these 'CASES" I read about. Dairy will not negatively affect him. How much easier will my life be if I can incorporate dairy into his and my family's diet.
He seemed fine in the morning- fine enough that I let him pick out yogurt at the supermarket. ( How soon you forget to really look at labels of the foods you no longer purchase- red and blue food dye, high fructose corn syrup- artificial this and that. This food is off limit anyway) I remember reading in one of the many books I have absorbed over the past few months- " my son's behavior was erratic and off the wall and then I saw the note in his back pack- your son ate cheese today" I told my mother in law about how relieved I was that Robbie didn't seem have that problem and explained the passage in the book I read to Rob- (Dad). Robbie was a little wired this morning but nothing to cause concern. As I replay our day- I want to cry. I took Robbie to the grocery store in the morning. While his speech was good, behavior was a little off. We pulled into the check out- he sat in the main part of the shopping cart. The women loading bags was trying to get him to move his legs- to make room for the grocery's. He would not move. I explained- he is autistic- plant the items around him and I'll put any extra on the bottom of the cart. Now- I have gotten used to people saying" I never would heave guessed your son is Autistic." She looked at me- like she already knew. In retrospect- it could have been the chips he was holding in one hand - OR- the bag of rocks he had on the other side. ( Rocks from our driveway is a new obsession and I came home to multiple zip lock bags of rocks in the garage and house.)
At home Robbie was unquestionably more wired than usual. He must of jumped on our bed 500 times without getting tired- etc, etc. I decided to take him for a bike ride. He was so hyper and I did not want him to wake his sister from her nap. I also really wanted to spend some quality time with him. ( being gone all of last week and most of next week for work) Robbie got into the stroller attached to the back of the bike and sat very patiently as I rode around our neighborhood. I did notice him clenching his hands and closing his eyes- but I've seen this behavior a lot. He expressed his desire for "water" ( going to the lake) every few minutes. We did stop and had a great time at one of the beaches. When it was time to go Robbie did not want to get into the bike carrier. We battled and the decision was made to walk next to me as I walked the bike. A few feet into our journey- a man who had recently pasted us-was on his back in a ditch, convulsing- obvious seizure. A women who had spotted him first screamed for me to call 911. A few minutes later - you can imagine the chaos. Neighbors, police, family members, ambulance, cars asking what happened- (remember - we live in a very small town.) Robbie had what I will always refer to as a classic autistic moment. He held his ears and screamed, while clenching his fists. He would not get into the bike and I yelled at him for running into the street while the chaos and extra traffic flow was happening. He would not walk- had to be picked up and was very distressed. I had called in to 911 to explain where we were for the man convulsing on the side of the rode. The 911 operator was yelling me to stay on the phone and calm down after I had given her all the required information. " I have an autistic 3 year old who is running into the street holding his ears- SORRY" i yelled and hung up.
I called Rob to come get Robbie. Thankfully he appeared a few moments later.

How is this all interrelated? Dairy is a food Robbie can not have. It causes him to become over excited and not sleep- nap etc. When he is tired and off schedule- everything is more intense and harder. I will never forget this day and the look on my poor child's face. His "gut- or ability to digest foods" rules his rest. His rest rules his coping ability. As parents- we make the rules.

We Miss Mommy

Well, my wife(the real author of this blog) is away for work this week. Honey, we really miss you!

I thought maybe I could post something because since school has started for both Robbie and myself things are getting frustrating. The ABA services my wife has talked about before have not started up again along with school. For some reason the school district wants to try and cram three different services into a 2 1/2 hour pre-school day. Now I have to say that they have worked realy well with us over the summer....the pre-school that is. But now that pre-school has started its like, oh well, we'll get to it when we get to it.

I think I went from the parent they used to like to talk to to the guy they will not answer the phone for. All I'm trying to get accross to them is that two Pediatric Neurologists and one Developmental Pediatrition that we saw at least had one thing in common..."whatever you are doing DON'T STOP because it's working." Everytime I tell the head of the child study team at my son's school this she absolutely changes the subject....It drives me crazy.....but I stay calm.....for now. Well, I'm gonna end here because it's obvious that my wife is a much better writer than I am so I'll spare you all the time.

I also wanted to add that a lot of you have sent very nice wishes, thoughts, and prayers our way. I would like to say thank you for that!

Another Doctor's apt.

We had another doctor's appointment with a developmental pediatrician. We chose this doctor because we could not get a local appointment for 2 YEARS- yes I said 2 YEARS. (Once again- I heard that voice " Are you kidding me????" ) We booked the appointment in June and were seen by Children's Specialized Hospital in North Jersey in late august (much more reasonable). Rob and I agreed that we really felt good about this place and this doctor. She was much warmer than the doctors we've seen previously. She listened and gave us some great positive feedback that we have been dying to hear. The one thing that did stick out to me was her "diagnosis" at the beginning of the appointment "mild", "no reason why he won't go to college", "so much better than most I see" seemed different that the one at the end of the appointment. As the appointment progressed Robbie took his shoes off (for the 3rd time) and began a behavior we've become accustom to seeing- the concerned look on her face could not be ignored. "I am concerned with the cyclical behavior." we were told. It's hard for me to articulate these behaviors- Robbie will begin playing with markers and take all the caps off. Then he will put them somewhere- diaper bag, purse, drawer, under the couch- a few at a time for hours. He will draw with markers and only use 1 color (preferably green) and will initiate someone else to use another color on his paper- but will immediately cover it with the green he was using. I kick myself- because I used to think -I'm so lucky my son will sit with these craft projects for such a long time- while I make dinner or clean up. Recently it has been these behaviors that are cause for concern. He can't get out of the cycle he creates. If you force it- there is a major meltdown. At the end of the appointment we were told he falls somewhere in the middle.- "low middle"- but still- no more information than we have received previously.

We're anxiously awaiting what this school year will bring. Robbie will benefit from the structure and schedule- however we're still battling with the school district in regards to what services he gets, for what length of time and can we get any of them after his 8:23- 10:53 am hour preschool day. How will they fit speech therapy, applied behavior analysis and occupational therapy in a 2 and 1/2 hour day- 4 days a week? What about socialization? As we've been told and have learned- Autistic children do not learn by accident. They do not pick up the information and social cues other children do. They need to be taught everything. They need to be taught EVERTHING!!! They need to be TAUGHT EVERYTHING!!

Meeting other Autistic children.

We went to the lake this weekend. It was great- quiet- very few people there because of the rain earlier in the day. One of 2 groups of people had a dog. Dogs are generally not allowed at the lake. The other group- a father and 3 young boys- were swimming in the water and telling the pre-high school boy and his father that dogs were not allowed. As we watched this discussion between the groups- one thing was very obvious -- to us. The boy had some type of special need. The father was calmly trying to explain that the dog was a "companion" dog and therefore allowed on the beach. The man - with the 3 young boys- was arguing, demanding proof and "calling the police." This upset the special needs boy. He began cursing and getting upset. His father- once again- was calmly showing him the rules posted at the lake. The dog was allowed because of the circumstance,with tags to prove it.
Now- i can't lie. I prayed this boy was not autistic. I hoped he had some other special need. But, I knew. I knew when I first looked at him and he had trouble with eye contact. I knew by his awkward movements. I just knew. This boy was autistic.
The father explained that they had moved to NJ from Los Angeles, CA because after much research- NJ- has the best schools/programs for Autistic children. He said his son has made a lot of progress and he's very happy with his development.
Once again- I can't lie- watching this boy made me sad. This is not what I hope or imagine for my son. I hope/want better than what I saw in this boy. My heart ached for him and his father because the situation at the lake was so stressful. I know all children on the Autistic spectrum are different. I want Robbie to be in the percentage of children that are cured. We- his Father and I - are doing everything in our power to make that happen. But what if it doesn't??????

Good Days. Very good days, Bad Days, Very bad days

Some days are great and some are very tough. What constitutes a good day? A full night sleep (and a decent nap)and 2 bowel movements are the basics. After that - good eye contact, following direction, changing activities without a meltdown, minimally stimming- repetitive behaviors- and using language appropriately. While this may seem like what every parent of a 3 year old looks for- for us it is slightly different. Some days Robbie looks you in the eye and says " Mama, I did it" when referring to getting himself dressed- or "are you ok? and kisses his sister when she falls down and you feel a real sense of hope. Other days when he is totally focused on picking out 1 particular shape of bead and putting them in his backpack- 1 at a time for 3hours- and you can't get his attention- you feel despair.
When you have a stretch of good and very good days- your hopes and dreams of "curing" your child feel very real and within your grasp. When you have a stretch of bad and very bad days you feel your heart breaking. All you want is for your child to be happy and healthy. To learn, to have friends and be able to develop relationships- as other do. But on those bad days- you wonder. Will this ever stop being so hard? Will your heart ever stop aching for your child? I know the answer is probably no.

Walk with me in having an Autistic child

The following was sent to me by my good friend Nanette-

Walk with me in having a Autistic Child

Walk in my shoes
for one single day.
Then you'll see why
I need to pray.
Come live in my home
for a week or two
and then remember
I am just like you.
I didnt ask for the things I was given
I didnt choose this road I have taken
Walk a mile with me hand in hand
Then perhaps you will understand.
I'm not really complaining
about the stress in my life,
I know that we all have
some toil and some strife.
But walk with me, when you think
I am wrong, walk with me
and you'll start to belong.
Embrace my sorrows,
like they are your own,
And then you will know me
And see I have grown.

The journey I take
is different from yours
My life took one of those
unexpected detours,
But this road that I travel
is not really so long,
If the people who watch me
will join in my song.

Listen to my footsteps
and watch how I dance
And then you will know me
and give me a chance.

Take heart and remember
It can happen to you,
who knows where my pathway
will cross over to you?
So speak to me softly
if you can't understand
Remember I once stood
right there where you stand.
And walk with me gently
when the day is at end.
And then I will know
I can call you my friend.

Sally Meyer 1999

What's working?

So what's working and what's not? That is a really tough question- because I have no idea. Is it speech therapy? Is it ABA therapy? Is it diet ? Is it his age? Is it nothing? Is it all of the above combined? Everyone has an opinion as too what single thing is causing the change in Robbie- good and bad. I don't know what is causing it- Or if it is only one thing and not a combination of many.

What I do know is Robbie's vocabulary has tripled- at least- in the last 8 weeks. His eye contact has improved -for the most part- and -sometimes- he seems to be able to communicate when eye contact is hard. Today we made huge progress with "I" versus "We" versus "you". For the first time- Robbie said " I did it" - instead of "we did it". while it needed to be prompted 85% of the time- we have been working on "I want etc" for 6 weeks and he has never said it. Once again- it must seem like such a small step- especially as I watch Lexi- our 1 year old- master so many words already. But for us- the association of "we" vs "I" is HUGE!! Many days I am very hopeful- but today as I hear my son repeating word after word and following direction as he never has- I feel unbelievably lucky. I have been hearing " Give me a smooch" from Robbie for at least 2 weeks- probably 10+ times a day. How awesome is that?!! Who doesn't want a "smooch" from their child. Some days are becoming filled with more good behavior than bad. However other behaviors are becoming more apparent. Obsessive- compulsive or stiming behaviors?- We're not entirely sure. Sometimes they seem like seizures- which are really scary. We are learning every day how stress especially- seems to affect Robbie and hopefully how to alleviate that stress. Helping Robbie is the goal :)

First (of many) arguements with our pediatrician

Yesterday we had 2 doctor appointments. the first was a neurological pediatrician for Robbie and the second was a "well visit " for Lexi- because she turned 1. Robbie's appointment went pretty much the way we'd anticipated. "Your son is somewhere in the Autistic spectrum." I was hoping to get a little more information- but I am realizing we may never get more information than that one statement. The nurse was did the evaluation said we should be hopeful. At first she didn't think there was anything wrong with him. He held eye contact and responded to tasks- for about the first 5 minutes. After that he seemed to fade and didn't respond to many of her requests. The doctor was a real disapointment. He brought us int his office and regurgatated the information we had relayed to the nurse. "thanks Doc" Rob asked what he thought about the possible link to vaccinations. " I hate shots- the needles always hurt" ha, ha, ha. I understand that many professionals have lost empathy because they deal with the same issue all day. However- that attitude does not sit well with me. He stated there is no link between vaccinations and autism. We should "stay the course" because whatever we're doing is working.

The next doctor's appointment was Lexi's "well visit." I knew this one would be a battle. When I called to make the apt. i told them she will not be getting shots. I had to re-tell this 2 more times when I arrived. The doctor tried her best to explain how there is no correlation with ASD and how children have died from not getting all their shots. The scare tactic really pisses me off. I explained that Lexi will get some shots after she turns 2- and not all at once but space out with at least 6 months in between and some- she will not be getting at all or for many years. She has had 14 shots in her first 9 months. Doesn't that seem like a lot? 2 of these are a series of Hep b shots. My question to the doctor was- why does an infant need a hep b shot?? She's not sexually active, around anyone who has it - or binge drinking. This shot can wait- I've heard until a child in 12 years old. Her response was astounding to me. "The reason infants get that shot- and so many others- is children don't go to the doctor when they get older. Now- not necessarily in Medford (where we live)- but nationally." So what I heard her say is- it's easier to give children under 2 - over 30 vaccinations because some parents aren't taking care of their children's health. Once again I hear myself "ARE YOU KIDDING ME??" Maybe some parents don't take adequate care of their children- but don't you dare lump us into that category. I explained Lexi is not in daycare anymore. We've hired a nanny. Lexi is not getting shots today- my foot is down. with that I signed whatever waiver they gave me and we were on our way. -- Didn't we all survive chicken pox??

Frustrated - AGAIN!!

We discovered Robbie did not have an IEP for the Fall. What that means is- no special services. The diagnosis came at such a tough time during the school year and we were so anxious to get started - we didn't think that far in advance- and I think the school district was very happy with that. So many people have told me "you have to fight for everything" in regards to services for your child. I had not felt that way until today. The PhD- director of the child studies team wanted to come observe Robbie during an ABA session- because she doesn't think it's valuable- and we are pushing VERY hard for it. Robbie's session is now 8am-10am, monday- thursday. She came at 9:30am. The school district wants to cram pre-school, speech,ABA and OT into the 8:23- 10:53 time slot at the pre-school Robbie attends. ARE YOU KIDDING ME??? When will Robbie get to socialize- which is so important. Now Robbie is getting 8 hours of ABA- (2 hours a day 4 days a week) and 3 hours of speech- ( 1 hour a day- 3 days a week). OT has not been put in place yet- but I assumed it would be similar to speech. Robbie has made such amazing progress in the very short time since his diagnosis. -ex- Last night- As we struggled tring to get Robbie settled down for the night and could not fiqure out why he wouldn't sleep. For the first time ever- Robbie told us why! "it hurts" pointing to his belly. He needed to go to the bathroom and could not. In my research on ASD and similar disorders- most children on the spectrum have issue with "leaky gut". They simply can't digest some foods the way other do and this causes multiple problems. (This is why the GF/CF diet is so crucial. ) While being up half the night definately sucks- my son has finally told me WHY!! I'm not sure I can articulate the joy that this brings me. If Robbie can communicate what is bothering him- then it is so much easier to help him fix it. Rob had a conversation with one of his friends at work last year- talking about how difficult our nights had become. Robbie was a fantastic baby. We had felt so lucky he was such a good sleeper- while so many of our family and friends had children that were not. Why - now- was sleep such an issue? Rob's friend said- "Maybe he has a headache and he can't tell you- or some other ailment." I hear that statement in my head so many times- especially when I'm exhausted and can't get Robbie to settle down. How awful would that be- to not be able to communicate with anyone- even those closest to you.
Back to the school issue- We can't let him slip- even a liitle bit. He needs the services we are getting and we will get them. The director of the special ed program said- ABA is so basic that we can just do it ourselves. Well guess what -we are and we do every day- but he still needs more. She doesn't see him as Robbie- she sees him as case # whatever. Once again I thank God -Rob (dad) is a special Ed teacher. He is confident we will get want we need for Robbie. And I trust that we will too!!

Frustration

Robbie has been making tremendous progress- and for that we are grateful!! We still face challenges- and sometimes are not sure how to deal with them. A schedule is so important for any child- this we all know. For an Autistic child- it seems to be that much more crucial. Our frustration lies on how much is too much and how much is necessary? We want the life our friends and family members have- bringing your kids to family functions, friends houses, birthday parties- without the real concern for a "major meltdown." ( By major meltdown- I mean crying uncontrollably, throwing things, and possibly getting sick,) The most frustrating part is not knowing what caused it. Did he eat something that he shouldn't have? Is it the change in routine? Does he have a headache, stomach ache- etc that he can't communicate? The reality is we will probably not know for a long time what causes these "meltdowns". I am hopeful that one day he can communicate what's wrong or we will have a better sense of his issues. In the interim we hope that our friends and family will bear with us- while we figure out how much is too much.
We went to Disney last March. One of the pictures is posted- Robbie at 2. We decided to see Sea World instead of the theme park because he was so young and for all that money would it be worth it? . What an awesome time!! Robbie was great on the plane ride there- slept through every night in his own bedroom and really enjoyed (most of) the trip. Looking back he did spike a really high fever on the way home- and was sick for a few days after. Did that trip attribute to his Autism? Did he have some virus? Did he have a late reaction from vaccinations? We'll never know. But I do know that Sea World at 2 years old was a great trip. Sea World at 3 years old- scared to death. It could go either way. But isn't that the case for most parents????
I am posting my most fearful picture. This is a picture of Robbie in late may- early june- just before his diagnosis. It is one of those things you look at and think--- OH MY GOD-- how could I not see this. But if you look at other pictures posted prior times and around the same time- you may feel our frustration. Fyi- only the red balls were allowed in the water table that day. If any of us- Lexi included- tried to add another color- Robbie threw it out immediatly.

The Diet

As soon as we got the official diagnosis- Dad (Rob) dove into getting the services through the school district.He talked to teachers in the special ed department at the school he works at. The lucky thing for us is Rob is a special ed teacher- which means he has attended many IEP meetings. ( IEP- stands for Individual Education Plan) He knew we could ask for anything and neogiate the details. They offered 2 - 30 minutes speech sessions at our house for the summer. We got 3 - 1 hour sessions at our house. For Robbie , this has been extremely important. Getting and keeping his attention is a struggle- so the hour really makes a difference. ABA has offered 4 - 2 hour sessions a week. This helps with following direction and not being so rigid. For example- Robbie loves to play with beads. His fine motor skills have always been very good. However he would string only 1 color together. The round blue beads- or the spiked pink beads. If you mixed them, he would become upset. 2 weeks ago Robbie was playing with the beads and stringing multiple colors and a few different shapes- in no order. While this may sound trivial to most people, for us it is a huge step toward "recovery".
While Rob has been busy getting all the services Robbie needs I have been working on changing his diet. Most people by now have heard that diet is a huge factor for children with ASD. We have eliminated artificial colors, (ex- red dye #22- what on earth is that?) high fructose corn syrup, gluten ( wheat) and casein (dairy). This is an on going challenge - especially if you want to go out to eat- but we are lucky there are a lot of alternatives. My biggest accomplishment this week has been finding an alternative to rice crispies- (after 3 tries.) Who knew rice crispies had high fructose corn syrup in them?? Needless to say- a lot of this trial and error- because some of the foods are horrible-( there is NO alternative for mac n cheese) but we're figuring it out.

Adjustment

Everyone says when they are expecting- all is want is a healthy baby- 10 fingers and 10 toes- etc. This is a really accurate description of how it feels to find out your child - perfectly healthy, with 10 fingers and toes- has a disability. a teacher/friend of Rob's sent it to us.


Welcome To Holland
byEmily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.* * *
©1987 by Emily Perl Kingsley.

Getting the diagnosis- (repost from spring 2009)

Your son has Autism Spectrum Disorder. That was a phrase we were not prepared to hear in late May, early June 2009. After asking for more specifics-"somewhere in the middle" was the response. Thanks for being vague- Neurological pediatrician!! We left the office with a prescription for intensive speech therapy, Applied behavior analysis therapy and Occupational therapy- and a bunch of support group information.

Where do we start? When our perfect little boy turned 2 Robbie's pediatrician suggested we get an evaluation from early intervention- state based agency. This was due to a speech delay. We didn't think much about it and after a few weeks- decided to go ahead and book an evaluation. Shortly after 2 women came to the house and evaluated him on speech, fine and gross motor skills and basic development. He completed just about every task they requested and they were impressed by his independence. Robbie climbed into his highchair, grabbed the fruit bowl, began peeling a banana- which at that point he called "banana".

After the evaluation we were told he did not qualify for services because he had to be found at least 33% below average in 1 category or 25% below in multiple categories. Slightly relieved- we began to think about names for baby number 2.

Between the time Robbie was 2 and turned 3 we noticed his speech not developing and some words seemed to be lost. Every piece of fruit was "apple"'- even banana's. But he was still the happy, affectionate little boy he had always been. Then we noticed he didn't seem to play with other kids his age in day care. We would ask the daycare provider- if this was unusual. There response was- all kids are different. Sometimes he interacts- sometimes not. But at that time he was still playing with cousins and family friends, when we had them over. Or was he? Maybe they were playing with him?

We decided at 2 and a half to pay for private speech therapy. We thought some help with speech was all he'd need to be able to communicate and interact. We found a location about 15-20 minutes from our house. They charged $75 for 30 minutes and wanted to see him twice a week- on Tuesday evening(at dinner time) with 1 therapist and Saturday mornings- bright and early- with another. Each session involved a lot of frustration and tantrums. They moved him from room to room- trying to get and keep his attention. The evening therapist stated- after 2 sessions- "I think he may have sensory issues." That comment enraged and scared me to death. What are sensory issues? Couldn't it just be that this is the worst time of day for him? There is too much stimulus. You're kind of a Bi--h? After spending a lot of money, time and energy- we decided this was not the best option for Robbie- after all he was just "busy"- like all boys his age.

At 3 years old, we called the Medford lakes school system hoping for some resources close to home. They evaluated Robbie in 3 settings- our home, daycare and their school. At home, Robbie excelled at most categories with the exception of speech. The speech therapist could not get him to engage at all. While at the school, I had to leave briefly to throw away a diaper- when I returned Robbie was so upset he'd thrown up on the floor. I didn't tell him I was leaving- he was in a strange environment- with strange people- and it took me twice as long as I'd planned- beginning derailed on my quest for the trash by a friendly school nurse. So- this wasn't to be unexpected- was it??

When we read the evaluation done by a school psychologist at Robbie's daycare - we were very concerned. Robbie was not wearing shoes ( but his feet were probably hot, he needed a bigger size, I don't like shoes either) All the kids , except Robbie, were engaged in circle time. Next they had 2 choices for centers- coloring with chalk or making plants. Robbie was prompted to go join one of the choices. He ran back and forth eleven times ( yes , she counted) while making vocalizations- some sounding like "heeeee". at the end of the review it stated Robbie was in the 11th percentile of social behavior functioning.

We were happy to be told that - yes he does qualify for services. We got him enrolled in Medford Lakes preschool. This allowed the school system to get a better sense of his skill set and needs. This would also allow him to get the speech therapy we knew he needed. The day I brought Robbie to pre-school and stayed for a few minutes to see how he liked it. He had a tough time adjusting- but no major tantrums. The preschool day goes from 8:23am- 10:53am- odd I know. After preschool I picked up Robbie and was going to take him to kindercare for the afternoon- so I could get some work done. That was the plan- Kindercare could bus him to preschool in the morning and pick up him up after- so Rob and I could continue working. Kindercare is a place Robbie has always been very happy to go to. However on this day he had a major meltdown. He did not want to be there. He was tired. The morning had drained him. We knew we had to re-evaluate our plan.

Thankfully- between, myself, my husband and my mother in law we were able to get through the last few weeks of school. During the second week, Robbie's teacher pulled me aside and said " I'm not supposed to share this with you, but you may want to get Robbie evaluated by a neurological pediatrician." THANK YOU- was all I could say. Rob had mentioned seeing a pediatric neurologist in an IEP meeting previously, but no one said- yes that might be a good idea. We didn't know where to go or who to see. She said " As a parent I know you want answers." True - but the answer we received was not the answer we were really prepared to hear. ( Even after having read all the Jenny Mccarthy books relating to her personal story with an autistic son- and having a feeling deep in my soul that something was not right)