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.