The grass is NOT always greener

Last fall as I waited in the carpool lane at school, I endlessly watched a mom that always parked a couple of cars in front of me. As an ASD mom you often wonder what it's like to not live in our world and how lucky those are that don't have to deal with autism.

This is what I was doing as I watched this mom. Every day she would pull up and unknowingly entertain me. Some days she would get out of her car with her baby in tow. Sometimes she would change the baby in the back of her truck. Other times she would walk in and out of the office to drop off party supplies. Whatever it was, I was in awe of this mom.

Why? Well, her life seemed perfect. She was composed. She was picking up the perfect little boy who was in the 4-year-old age range and had a second baby in her arms. The baby reminded me so much of my son at that age. She is blonde with perfect hair, a fit body type and always has a smile on her face. One happy smiling family with no issues like mine! What was not to envy? This is what I want! A second baby that has yet to happen in my life, a constant smile and just that easy life I seem to think parents of typical children have and take for granted.

Out of nowhere on March 31st I got an e-mail from my husband. He was getting a physical and the nurse mentioned her best friend also has a child with autism. She would be calling me, he said. She did. She called me and we spoke for like an hour. Yet another random mom I talk to and connect with in the hopes of helping out her son. It was a routine day for me. Except this time, it was different. I arranged to meet this mom for a playdate the next day to keep chatting.

It was April 1st (April fools day). She happens to live BLOCKS away from my house. A two-minute car ride! Wonderful! I got there, and the door to her home was open. I called out, and she yelled to come on in. She peeked her head through the door, and there she was.....the mystery mom who I always admired. April Fool's Day on me!

I could not believe this! No! Can't be! Why does she have to be an ASD mom too? Damn it! There goes my "grass is greener" concept. My heart sank, and I was angry as well. All this time, she was going through the same ups and downs as I was. While I welcomed yet another ASD mom friend and was excited to have found such a cool one, I could not help but wonder how bizarre this scenario had been for me. I wondered if maybe I come off this way to others as well. After much thinking, I realized I am also always smiling when I pick up my son, and he is pretty perfect too! It's all how you look at it, no? Taught me a quick lesson about assuming and we all know what that means. . . 

It has been almost two months that she has been in my life. What a Godsend she has been. We are so similar! We have made each other cry and laugh. I find myself reminding myself of things to tell her the next time I see her. The daily pick up car lane afternoons are now spent chatting up the latest updates in our lives and comparing notes.

I no longer get to watch her and imagine her happy life, I am now a part of it. I hope we can both be happy in it. She is my new best friend, and I hope to share many moments with her and one day, look back and reflect on this stage in our lives. Like she says "we will be sipping drinks in Maui laughing about it."

Love ya girl!

Nemo update..

Well, he never did swim during the two weeks of the sessions!

We tried passive and aggressive techniques, and they all failed. The mystery remains.

Just what is it that got him spooked?

At our home pool, he will now play on the steps and stay in the shallow area. Any attempt to bring him to the deep end or to "swim" will result in him running out the pool.

We are giving him time to get reacquainted with the water as if we were starting all over again. He seems happy when allowed to roam free and play.

The summer is still young so perhaps giving him time and space will work to our advantage.

Nemo no more...

Anyone that knows our son knows he is obsessed with the water. We have always said he was our little Nemo. That is, until now.

Last year he even took swimming lessons. By the time he was done he was swimming over the water just fine, could swim to the edge, pull up and get himself out of the water.

What happened? I have no idea.

We tried several times this year to start the pool routine again. We noticed that he was not as into it anymore and in fact, was acting a little scared to go in. Instead, he plays on the entrance steps and does not do anything else. While I like that he respects the water now, I do not like his complete disregard for it. Especially living in Florida!

I was initially excited when the school announced that as part of a drowning prevention program, the county would be sponsoring swimming classes for Kindergarteners for two weeks. I could not believe how great this was going to be! That is until we got to the pool on Monday.

He initially sat down next to the kids in his class, but then got up and left running in full panic mode as far as he could. Nothing I did worked so I just let him sit there while I sulked.

Yesterday was day 2, and it was the same. I tried not forcing him. I even left his clothes on until he requested to go in. He did! I then took off his shirt and shoes when he said "I want swimming" but then he ran away again. We tried enticing him with water, his teacher, and every technique imaginable and nothing.

Thankfully I was able to hide my frustration tears behind my big fashionable sunglasses as he just sat there watching the other kids jump, swim and splash around happily.

Part of me wants to throw him into the pool and make him swim (he knows how). The other part says well if you want to sit there, then sit.

Today is Day #3, and I am NOT looking forward to it. I am dreading it. My husband says he is going tomorrow and that he WILL throw him in.

As an interesting side note, we told him all day yesterday that if he did not swim, there would be no hide and seek (his new favorite game with us) at night. Well, when my husband got home from work he did not even greet him. Instead, he stayed in his room with this eerie quiet and respect. He did NOT request to play hide and seek (that he has been playing for two weeks straight) and when my husband scolded him for not swimming, he just stayed mum. He usually would cry or try to make us forgive him as he always detests when someone is mad at him.

I wonder what goes through his head. What is he feeling? What does he want to tell us to make us understand what has happened? It is incredibly frustrating not to know.

So, I leave you as I get ready for the dreaded swimming lessons. Today I will attempt his favorite water toys and wet his feet with more water.


More updates later. Wish me luck! :)

It's baaaaaaaack!

The last time we had tested my son's urine for yeast it was a half-hearted attempt. He was not potty trained and the urine was mixed with a little water as we attempted to collect it in the tub.

Now that he can go on command we finally got a good sample and scary results to go with it too!

I got the results and then waited about a month to speak to my doc about it.

As it turns out, the OAT identified toxins produced by yeast. Well, duh.

He has elevated: hphpa, arabinose, 3 oxyglutaric acid and citramalic acid.

What does this mean?

Well I can go into the entire medical explanation, but I really like mine better: THIS MEANS THAT IT SUCKS! Yet one more thing that sucks about autism.

Now, my baby is supposed to start on grapefruit seed extract, Lacto-duo, colostrum and lipolic acid. Four more supplements to add to his diet?

The scary part is the supposed protocol to follow this week; the grapefruit seed extract for 10 days, then the lipolic acid for 3, and then conclude with a urine and stool collection.

There are days that I want to just take it all away and hand him a bowl of pasta with lots of cheese on it (you know, since he is gf/cf/sf). But, I know that would do no good either so then, what to do?

I am not looking forward to this. He has also been a little spaced out. We call his name and it' s taking him a good 2 or 3 tries to finally get him to look. This has not been present in about 4 years so it is heartbreaking to see some of that return.

Should make for an interesting post next week when it's all done.

Update on us

Grunts? I will take them.

It seems my little monkey is truly trying to communicate with us more than ever before. When disciplining him it goes something like this:

Me: Don't touch

Him: (Insert grunt here)

Me: I said don't touch the _________

Him: (Insert more grunts here)

and so on.

It's annoying, but very cute that he is trying to "answer." He just can't find the words.

We have recently given him "I am sorry" and "OK mommy" to work with. He already picked up "I am sorry" or like he says "A- sorr."

There is continued progress in slooooooooooooooooooooow teeny steps.

He has also been saying "Are you OK?" instead of "I am not OK" It's his FIRST ever attempt to tell us something is wrong. Therefore he says "Are you OK?" and we reply "Are YOU OK?" and then there is silence, but at least we now know when something hurts or is wrong.

He actually had a fever on Tuesday morning and he told us in the middle of the night with his "Are you OK" phrase. He stayed home from school today and he was doing his "nose" stimming  Then he said "Are you OK? Ears!" so that's some progress, right? In the past, he has complained about his ears, but each time we take him there is no ear infection. I'm not sure what is going on there. Hmmmm...

In another improvement as of late, he is now drinking completely from cups without any prompting! Such a simple thing that took so long to master.

I am anxiously awaiting for summer to begin to start his 20hr ABA weeks. I have high expectations from this, being that 10K will be going out the window. :( It is the most expensive therapy yet!

We took away all soy! The only thing remaining now is soy lecithin. That's it! Soon we will find a nice recipe for air; there is not much more left!

Oh and this is the best one: He can now draw a happy face! Yup! He says:

"Circle, 2 eyes, nose, and a happy face (smile), ears and hair!"

They have been teaching him at school. I asked him to draw a circle and he drew the happy face and I could not believe it!

So, all in all, it's been going good. Still very slow and have not found our miracle but I will take anything that comes our way!

Green, three -eaded kids and the birthday parties

Ahhhhhh the business of kid's birthday parties!

While most parents of normal kids plan and stress over the details for a birthday celebration, they are unaware of how equally stressed we parents of kids on the spectrum are as well. 

For us, no detail must be left behind. Everything has to be perfectly planned and timed in order to ensure my child is in the best mood. The special gf/cf/sf foods have to be prepared ahead of time and into my son's lunch box. Once there (while other parents hang around, drink, eat, and socialize) my husband and I take turns being my son's shadow.  We must make sure he does not push anyone (new phase), take someone's toy (imagine the joy of explaining the sharing concept once again to my son in mid-party), or put himself in a position to endanger himself (such as pushing a chair to climb the pool fence or run away).

It's with much joy that I put our family in these situations over and over. I am kidding of course; it is a much dreaded event to open invite after invite. I am beginning to think that perhaps it's best to just stick with "my own kind." You know, parents of other autism kids who get it or just stop attending parties altogether. 

We recently had a party "incident." My son cried from start to finish. I finally had it and left abruptly. Why? Well, he did not like the generator noise the bounce house was making. All the happy-happy-joy-joy guests tried guessing why my son was in full tantrum. "Oh, he is hungry,"  "Afraid of balloons," "It's too hot." Such great pearls of wisdom. I know they meant well, but forgive me for not wanting to hear it as I tried to help soothe my son's behavior in 95 Miami, Florida heat. 

The very latest one started out as a good one for my son. Bounce house, outdoors setting with a nice breeze, and a perfect sunny day. The first thing he did was run for the pebbles and throw one in my friend's pool- a habit we have been battling for a couple of months now) I got that one under control and he thankfully moved on to something else. The bounce house was a hit this time. He jumped, climbed, went down the slide, and had a blast. Silly us, we thought it would all be smooth sailing that day.

Fifteen to twenty minutes into the party, he found a toy activity table he liked and almost took it away from a 10 month old (who was using it as a stabilizing tool to stand up). I say "almost" because, of course, we autism parents were watching like a hawk and stepped in right in the nick of time. We saved the day, the 10-month old's face, and moved on to the next scenario.

I have to note that my son has been to this house before. In it, there is a playroom and a big TV. He has played inside and watched this TV before. None of it was available on this day because the party was completely designed to be outdoors only. Not great for us, but the host's right to do so. The problem was, I was not aware of this prior to the party (and had I known I probably would not have been able to attend). It became a big problem when my son decided he now wanted to go inside to continue playing. 

Go along with me here. If you have a child with autism, you know that explaining things to a child severe cognitive delays is like talking to the wall. In his world, I am the one keeping him from going inside. It's black and white. I can speak slowly, attempt to draw it for him, and keep explaining until I am blue in the face and it will not work. Adding to the problem were the extreme loudness outside (which might have started to overstimulate him), and the Florida sun beating down on us. Did I mention receptive speech is also not his forte?

We tried for about twenty minutes to chase and redirect him to different toys. We also took short breaks in between to sip some water and catch our breath. He finally realized we were purposely not letting him go inside the house and he held on to the door for dear life attempting to enter the house.

If you can please, for one second  imagine my husband pulling my five-year old off the door and him screaming like we were killing him. I believe there was a record scratching-moment of pause at the party when everyone turned to see who was screaming so loudly. 

We finally decided to pack it up and leave. I understand the party rule was no play inside the house. We did try. But I also know I could not explain this new rule to my son especially given he had been inside so many other times. As we were leaving, I briefly mentioned the reason we had to hastily leave to my friend. She did not extend an offer to let him go inside. I think the situation could have been saved had he been allowed to go inside. Instead, she just said "Aww, OK bye."  I wasn't go to impose and insist, so that was that. In the midst of this, we started getting side eye from some of the other parents as my son kept crying. Awesome. Just, awesome. 

This is for parents of typically developing children:

(most taken from the very popular Ten Things Every Child with Autism Wishes You Knew post that has been going around and with some added comments by me)

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*………" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me "It's raining very hard." Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included. I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. PLEASE DON'T JUDGE ME. I cannot control my impulses.

10. And finally, three words: Patience. Patience. Patience.

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That said, I was very upset and in tears as we left yet another birthday party due to behavior issues. My son did not get to see Spiderman who was making an appearance later and did not get to participate in the singing of the birthday song

Just another day of autism....
 

I sometimes think that autism being an invisible disability makes it worse. Why? People look at our son and immediately assume there is nothing wrong with him. Surely, it must be our parenting. I am going to be extreme here and a bit silly, but I  think if all kids with on the spectrum were green and had 3 heads there would be a cure by now. Seriously, stop laughing. It's a lot more acceptable to read about the 1 in 150 kids affected by autism, feel bad for a second, and go on with your day. But, if you had to look at a hell of a lot of green kids with 3 heads walking around all day, every day, something would have been done about it by now. The sense of urgency would be different. You would be reminded all the time. Isolating and discriminating against these kids would only work for so long. At the rate we are going, it won't be long before there will be a child with autism or special needs everywhere you look. 

I am tired of the lack of understanding I encounter on a daily basis. It's changing who I am. I don't want to play all sides and be a people-pleaser any more. It's much easier to come out, guns blazing, right off the bat defending the rights of my child.  Kids on the autism spectrum are not going away and I am not going to live in a bubble. Compassion and empathy would go a long way. Pass it on! 

Doc update...

Just got off the phone with our doctor regarding results on some recent blood work:

- He thinks my son might be borderline hypoglycemic. His blood sugar level was low and he says he needs to be fed constantly and with not too much sugar. Will need to do another blood test but he thinks it’s not too serious.

- One of his liver acid levels is too high and he is sending him a milk thistle/artichoke liver health

supplement to help with that. 

- His potassium is high and he says he just does not know why and that we should retest that along with the liver in about a month. I just now remembered that he eats a banana a day. Could that be it? I e-mailed him to see what he says about that.

- I messed up and there was an urine test I was supposed to do but didn’t. I forgot it. Grrrr it was the most important one! The one for the yeast! Will do that today! Geez, it's not like I have a lot to remember right?

- He says he is developing a possible allergy to soy, so to cut that 50%. I told him it’s just 2 yogurts a day and he said to cut it to 1 or cut them both out. Great. More stuff he can't have.

- Also said to alternate the peanut butter with cashew butter and almond butter so that he can stay eating it or he can develop an allergy to that as well……lovely

- There is a crab reaction showing in his food panel IgG, since he has never had crab then it comes from ME!!!!! WOW!!! 5 ½ years later????????? Incredible! (I do love crab-urge).

- I asked him about liquid zeolite and NDF Plus I read about. He says it’s “crap” and “bunk” , that the guy that presented that at a DAN Think Tank comes from a company that sells everything “pyramid” style, that it’s super expensive and that while it's not harmful- it is not worthy of looking into. I know a mom who swears by this and says it helped her son recover. It's a tug of war of the cures I tell ya. How do we know who to believe? I know people who say that about DAN docs, but here I am believing in one. What gives? I guess you can try anything once? 

He has been increasingly curious and mischievous these past 2 weeks. He gets into everything and touches everything! It's like a delayed terrible 2s which he never had. Funny that we ASD parents praise this "Yes! He is getting into trouble-woohoo!!!" To us it's a step closer to being "normal." I use the word loosely because as we all know, "normal" is just such a biased word, an open book for interpretation.

Yes, whatever "normal" is, we want it!