Tuesday, July 14, 2009
My husband asked me today, "so, how do you feel".
"what do you mean?" I said.
"Do you feel like those people that get cancer and once they find out they're in remission, they get all upset about it."
"I think you've watched one to many episodes of breaking bad," I replied.
Honestly though, I really don't know what to make of it. The neurologist is keeping his label until next year or the year after that, when i see him again. He doesn't want to take it off until we're done with all therapy.
Honestly for speech. He's only behind a couple of months...which is crazy since he just started speaking.
ABA, we're taking him out. Even his BCBA agreed. He did exceedingly well on his ABLLS.
We have an OT eval this Wednesday. I'm not cancelling any evaluations, I've been waiting to long, I figure, if we need anything, get it while we can. The only thing he might need help with is riding a tricycle (really) and his handwriting. He's still ambidextrous. Which might be the reason why he has problems drawing. He uses both hands equally.
We would still like to do Floortime, just for some social work. It would be a group setting. Honestly though, once he warms up to you, he has no problem asking you to play. Yes, he has friends and he call them over to play...he even asks for them when they are not around.
Anyway, we'll see where this all takes us, I'm still treading cautiously though.
Thursday, July 9, 2009
I have to say that since we've gone, Kai has been talking up a storm. I mean sentences and answering questions. I don't know what exactly is doing it, but all these extra supplements isn't hurting. Not only that, honestly, he loves his vitamins. He asks for them every morning and night. "vitamins!vitamins!...mommy, vitamins please!" They must be making him feel better, or he wouldn't be so insistent on taking something that quite honestly makes me cringe. And yes, I've tried everything he's taken. I'm on the diet with him.
Having said that I thought perhaps a good idea to list the supplements he's taking and what it's for...primarily for my own use and also so I have a good reference for my own personal reference, should I need it one day.
So, this is what he prescribes all his patients.
Couple of minutes before breakfast and taken together
- Lipoflow forte
- IgG SD
- Fish Oil
- Calcium Magnesium Zinc
Follow up breakfast supplement (added 7/10/09)
Calcium and Magnesium- Calcium is important for bones and with a child on a gf/cf/sf diet, it's important. Magnesium is important in methylation and sufation. the processes that correct heavy metal overload. sypmtoms of magnesium deficiency are depression or anxiety, comstipaiton, tics, spasms, and poor appetite. (Bock)
DMG-125-increases methylization. Facilitates toxins through the urine. (Bock)
Fish oil- rich in vitamin d, vitamin, a and essential fatty acids. Everyone should be taking this.
Methyl B-12-methylcobalamin--detoxifying heavy metals (Bock)
Vitamin/mineral-who doesn't need these?
Probiotics-healthy bacteria that promote good digestion and help control dysbiotic gut flora, such as candida (Bock)
Zinc-"no zinc no think" helps cognitive functioning. Zinc deficiency impairs digestion, methylation, and immune response. Often occurs because of GI dysfunction (Bock)
Well, that's all for now. We go back in three months. He also said that we would do one more hair and stool sample. After that, he would start taking some supplements away. You know, all this would have been done along time ago had our pediatrician just sent us to a gastroenterologist two years ago. Shame on them. It took us this long....it would have been sooner, but hurricane season striked and unfortunately our appt coincided with Ike. Better late then never.
Okay, so this is where my husband thinks I'm going nuts.
So, my son and his sister have both been on the gf/cf/sf diet. Great, he's eating food he never would have touched before. His bowel movements are solid...for the first time ever!! He's saying sentences like crazy. He's more stubborn then ever, however i do think that's a symptom of being three though.
So, here's the issue. The kids, and myself, are gf/cf/sf. We don't do any artificial coloring or flavorings (if you want info..look at studies that the UK have done in relation to how kids act). I'm also incredibly strict on NO MSG!!! I swear, they hide that stuff everywhere! We eat all organic and I don't do substitutes, I make everything from scratch. Seriously, what's the point of trying to keep your kids' brains healthy if you're still feeding them the same stuff that's not nutrient dense. We're also ordering a cow that eats organic grass only, no grain fed cow for us. The cows have never been given unnatural food, pesticides, chemicals, and have never been vaccinated. This company is rare in that respect.
So fine. My husband says he's starving (which is funny, because he's gained 20 lbs). But he also thinks I've lost it.
I read a lot. Yes, I used to be vegan and i used to be in earth club in high school. I was one of those people, i wen to demonstrations, did the whole thing. Fast forward to now, i'm totally different. I don't recycle (my husbands weird about it and i didn't want to fight the battle), I eat meat, and I don't take into consideration what effects everything in my household may have on our children.
So, what did I decide...we're going green!! Maybe not off the grid..but we're starting.
The more I thought and thought and read and read...the more I'm just appalled at the lack of thought that I've been putting into our health and our daily lives. For this apathetic way of life, our kids our suffering. We don't know the effects that all these chemicals are having. I knew about the NJ study they did on the water and the souring autism rates. I know there is clusters of autism around refineries. I even heard about the less boys being born and the rates of sterility in men. All this because of synthetic chemicals. Chemicals that haven't even been tested. The more I thought about it, the more I thought, this has got to change in our household. My daughter has horrible eczema, which several of her doctors just said that it was some sort of allergen, change your detergent. Thanks guys...the same doctors who said there was nothing wrong with my son when i was asking to get him evaluated for autism and made me wait for a year. I digress.
In any case, I'm doing it. I plan on having chemicals out by the end of the year. I'm going to have to make some sort of itinerary list for my husband so he doesn't freak out. *Yes, he needs itineraries and lists or he freaks out big time. He can't handle change. I would like to see where this leads in regards to my kids skin issues. I'm also going to begin buying all their clothes organic. I know, I'm going overboard, a bit, but that's just how we are in my family...it's all or nothing. I know it's going to be a slow process, but eventually, it will become second nature.
If anything, it will teach my kids how to respect the environment, but more importantly, to respect themselves. Everything we do comes with a consequence. My son is just now beginning to learn that. For the first time in a year, he head banged, only once. He started to laugh and then looked shocked. He didn't expect it to hurt I suppose. Yesterday he started slamming his little sisters head against the shopping cart, I stopped him. He got said because I was mad and tried to lay his head on his sister. She bit him. Natural consequences. I don't condone biting...but every action has a reaction. I think he's just now figuring that out in his own little way...no matter how painful.
I hope my husband finally gets over the inconvenience of it all and realizes that this is for our health. Most importantly for our children's health. (^_^)
Tuesday, June 16, 2009
Kai woke up last night at 2am-5am. Fine. No big deal, bundle of energy.
Unfortunately, today, after he got home from ABA, he was just angry. Nothing was right. We went to play in the baby pool and the sprinklers were not high enough and not in the right place. So then he went to slide, the slide had a blade of grass on it. So he wouldn't slide (no, I would not take it off for him). Then he wanted his sister to play with him and she wanted to play in the sand (we have a sand and bean table). So he screamed and screamed. I told him that sometimes people don't want to always do what you want and you have to accept it and sometimes do what they want to do, if you really want their company. So she's playing with a toy(we have duplicates) and he takes it from her. So I take it back and tell him that he needs to ask if he can play with it or get another toy. He throws a fit and hits her.
Time out. Then he proceeds to hit and kick me. Which hitting in this household is unacceptable, especially adults.
Anyway, Kai is no longer allowed to play outside for the day because he hit his sister and myself. So, I tell him that he obviously needs to chill out and put him in his room. Where he just goes nuts...screaming, etc. Finally after about 15 minutes he opens the door and comes downstairs. He looks at me with the saddest little puppy dog face and says "sorry mommy...sorry mommy...hug kai...hug kai." So he has me hold him for like 15 minutes. I told him that when he's tired he just needs to tell me "sleepy". I know he doesn't have all the words yet and he can't express himself well at all. He tells me what happens in the moment. He still has a hard time answering questions, unless it has something to do with dogs. *that's his passion right now...dogs. When he's mad he growls. And when he's sad and cries, he grabs a kleenex, wipes his tears away, says "feels bettuh", and tells me that he's happy and makes a joke. His emotions are short and fierce...and then he moves on to the next emotion.
It's just so silly...the whole explosion. I hate it when he feels helpless and it's just that he has a hard time making up his mind and when everything is not perfect. I have to refuse though, the whole perfection thing. I can't just let him get his way...or make his little sister do everything he wants...just because. It's not fair to him, for me to cave. I know this. I'm hard on him, believe me. When he asks for help, I only help him two or three times. Then he has to do it for himself. You should see how proud he gets when he realizes that mommy knew he could do it all along, by himself. That's the one thing about him, he is tenacious and doesn't give up. He strives for perfection, almost to a fault. It's an admirable quality that I wish I had... The world is not going to bend for him as he gets older...he has to learn that. I'm not heartless though, like my husband thinks, when I don't let him get what he wants when he throws fits. I just know that I'd rather it be me, that shows him the way, then someone else, that's not going to have the compassion to hold him for that 15 minutes when he realizes that life is not always going to go away.
At the same time, I think I see my husband. His mother has always held his hand..too a fault. He's been sheltered and does have a hard time coping with the world. He has a hard time making decisions...about everything. If I don't make it for him, he'll call his mom *this could be something as easy as what to eat.. I don't want my son to be like that. I want him to be strong and independent and have the ability to make his own decisions.
I don't think this is too much to ask. I think people sometimes set the bar to low for their children...to a fault. I was talking to this lady once...about her autistic sons. I was telling her that I was going to put my son in dance and baseball and soccer, piano, etc. Anyway, so I tell her that I think he would enjoy things like that. She looked at me and had the audacity to say "well, i wouldn't expect too much". I was appalled. Maybe that's the problem. Autistic adults have done some pretty miraculous things, because their parents have set the bar higher, never gave up, and allowed them to try whatever they wanted and try and try and try again. I think that should go with any child...disability or not. How dare anyone tell another parent, not to expect anything, when they decide to try something new with their child.
Well, maybe I've gone off topic. So yes, today, I felt about 6 inches tall compared to my beautiful, resiliant child, that after all that happened, told me he was sorry and for me to hold him, just so he could feel loved for that 15 minutes. I'm just glad that I don't have the pride that my parents had...and told him that I was sorry that I was mad at him, when all he wanted was to lie down.
Sunday, June 14, 2009
The first food item that I started with was bacon...then sliced deli ham..cooked....which I cut with scissors and told him it was bacon. Score, that opened him up to trying ham, turkey, and chicken. I've also been making turkey burgers which he thinks is chicken. It's going great.
So far he's tried everything! I'm going to have to expand my list of foods to get him to eat. I only do three at time. One meat. One veggie. Next on my list, hummus, sausage, (which, if sliced thinly, he will call it bacon...this kid loves his bacon, thanks Dad), and zucchini.
Good luck to me,Adriane.
Thursday, May 14, 2009
Yes, physically, I'm spent. I should work out, but at this time, I can't...it's too difficult to squeeze it in. What's really tiring me out...is the medical community. I recently found out that the insurance we just dropped was actually going to pay for everything, they were waiting for my son's medical record...that were requested in November. Funny thing *not really* I had called several times making sure they were sent. The nurse said everything was faxed..lies...all lies. So, I'm getting the medical records this Monday and sending them myself. Then, the speech and occupational evaluation, not sent...I had to call 5 times to get it sent. Seriously...how hard is it to punch in 10 numbers and send it. Whatever. It's done..I'm persistent.
So, today we went to the DAN! doctor. He gave us a list of supplements. YAY! We're going back on the GF/CF diet. BOO! Oh, I get to take poo samples, that'll be fun. Actually, I don't think I've ever been so comfortable with poo in all my life. I don't know if this is a good thing or not. whatever. So, BOTH my children--and me--will be on the diet. It's really not a bad thing, it's just going back to basics...before the refined food. Oh yeah, we won't be doing all the cookies and cakes, etc...what's the point if you're loading up your kids with sugar?? right??
Next we have the psych eval in order to get our new insurance to pay for ABA. Sweet. Can't complain there. Next, new speech eval, neurology follow-up, and then OT eval...oops, and then another DAN! doctor appt for biomedical.
Luckily, Kai's school end next week. Driving so far was really killing me and our daughter...it was all too much.
So, he still has ABA 15hrs a week and will stop in August. Speech and OT will begin in August. I think I'm going to hold out on the floortime until September, he already had the eval and will be in a group setting, not an individual. His play skills are awesome *we play with him alot..and his 20mos old sister is one awesome therapist. His special school starts again in September.
We started PPCD with him and I hate it. They had the gall to tell me that they're not used to seeing such smart children with autism. I almost slapped the hoe. He will attend their summer program...3wk sessions. That's it. It's just not for us.
So this is why I'm tired.
Monday, April 20, 2009
What's really irritating me lately. Is everybody else. Have I lost my mind? It seems that I'm all alone. I told him of the above appts.-his answer-cancel one. Are you kidding me? We're on a four month waitlist as it is for free ABA. And the doctors appt, she'll only see us at a certain time, once a week, *she has it in her head that I want to talk about autism. Which is funny, I'm seriously autism 24/7 over here and that's the one thing I don't want to talk about, just give me my referrals lady. Sorry, rambling.
Back to hubby. He's never home. I'm alone with the kids from 6:30am to after they go to sleep. I don't know if it's escapism that he's after, I can't tell, really, I don't want to know. What I want, however, is understanding. He had the gall to tell me that he thought the reason that I went to confrences and resource fairs was to figure out how to "fix" my son, so that it would be easier on me and I wouldn't need help. Then he was said, "well, I'd rather just come home earlier so you can study like three hours a day."WHAT??? First of all, *oh, I'm furious at this point* I don't have any intention on fixing my son, helping my son, that's what I'm doing. Also trying to trouble shoot for later on down the road. Seriously, that's not what I need help with. My son is a piece of cake. I was built for this, really. What I wasn't built for a husband whose negative and thinks that I go to conferences for help. I need help doing the laundry....sweeping...mopping.
So then there's my "support group". If that's what you want to call it. I know they're fake. You can see it. Crap, my mom can see it. Yet, I'm starting a playgroup. Half these people didn't even want to talk to me. I would send email after email of information. The only time some mothers would email anything was if I made a typo. Yes, seriously. So, then it happens. I get a job at a school for children with autism. What do you know...I start getting all these emails about, what have I been up to? I'd love to come hang out. Honestly, I just need a real friend with a child that has autism. Everything just seems so awkward.
I find myself not really being me because it's so awkward. I thought I was the type of person that could fit in with everyone. Maybe I'm meeting the wrong people. I don't know. I'm really ready to shut it all down. I can see why I have so many friends who are introverted now. Being alone is just easier. At the same time, I'm so alone, I'm lonely. Isn't that a catch 22.
Alas, so here I am...alone. I have my children. That's all I have. That's what it feels like. Me and my two children...against the world. Man, I'm usually so chipper. This is nuts.
Speaking of nuts. This lady really pissed me off. She works at my son's school. She told me that she doesn't like working with autistic kids, she's burnt out, hates. You can tell. Anyway, she was my son's aid today, she pissed me off. I almost started crying I was so angry. My son, who's 3, likes to blow on peoples' arms. It's his thing. He giggles and laughs. So his teacher's aid is putting him in the car and he goes to blow on her, and she says "no more blow...i don't want anymore blowing". I was like...are you kidding me!! He's three and he's happy. He just wants to be affectionate with you. I don't know. It really made me rethink weather or not I want him in that school. I know I can't protect him forever and trust me, he has it hard at home. He doesn't get away with anything. I have to teach him...but that still doesn't give anyone the right to tell any three year old, that's just trying to be affectionate, that doesn't have a voice, that they don't want their affection.
Monday, February 23, 2009
First of all, we're finally done with all the testing on my son. Thank goodness. It was really getting tiring. Although, my son was having tons of fun, getting to new toys and having all the attention. We did the MRI, not fun, not fun at all. It was kind of funny though, when we walked into the room, the nurse told us that some children rage, only a few, so, we probably had nothing to worry about. His father and I just gave each other the look. It was going to be our son. Sure enough, 30 minutes later, who do we here screaming...my number one son. He had ripped everything out. Needless to say every time he woke up, he raged. This lasted about an hour before the happy drunk toddler kicked in. Oh wait, did I say happy..that lasted about 15 minutes. Then he screamed for an hour and a half after that. Kicked the door, kicked me, kicked his father, and screamed some more. It was horrendous. Never again.
Then the imaginary birthday party. That was crap. First they have all these toys scattered around the room. He of course goes to the one that sings and lights up. He finally gets distracted by a rabbit that hops. So, the lady looks all excited because she thinks he's going to pet it and love on it. No, why would he do that. He learns how to make it hop and then watches hop off the table repeatedly. The bunny had to be hid for the remainder of the session and the light up pop up toy. Then, they do the bday party for the stuffed doll. The "birthday cake" is playdoh. He just sits there putting the candles in and out of the cake...over and over again. The lady tries to get him to feed the baby. He does not. Anyway, she video taped the whole thing, yes my son is very famous now. My husband immediately says "wow, he did really well." I gave him the "look" and explained to him that he did not play with one toy appropriately and that he started stimming on two. And my husband wonders why the neurologist thought he was on the spectrum.
So, then he had all the IQ testing. The doctors said that he had really improved since the last time they had seen him. He's been in therapy since he was 18mos. and he'll be three in March. So, I hope there is some improvement after 18 mos.
Anyway, so our money is quickly running out. I've been trying to get an ABA program that my husband and I can do at home. Also I've noticed that he's starting to fall behind on his play skills, so I need to start a program on floortime as well. Currently he's not in OT or Speech. So that will start again in September. I just want to get all this done before the summer starts!!
We're supposed to go to Singapore in July/Aug to visit my father, so I really need to get it together. I don't want a break in his therapy for too long. Also, his school is almost up!! So, I'm a little stressed on how I'm going to handle him and my daughter.
He can't be around her for more than 15 minutes without attacking her. I mean really attacking her, viciously. I don't tolerate it. It infuriates me, honestly. So, that will also have to be addressed. I might start sibling classes for them next month.
Saturday, February 7, 2009
A Prayer for the Autistic Community
Thank you for giving us your Son
To teach us and forgive us.
He suffered and died for us,
And while he was on this earth
He healed the sick
And touched the lives
We now commit the lives
Of all autistic people in our nation
Into Your loving care.
We ask you to lay
Your hands on them
And give them
Give them the power of the Holy Spirit
To make them whole.
In Jesus Name,
From a Child -
Jesus, Thank you
That you are there for me
There are many things
I'd like to do better-
Like speaking and writing.
I ask you to help me.
You have already helped me in many ways.
Sometimes I see the world in pictures -
I like to draw, to watch TV.
I like to do many more things,
Which I can't do.
So please lay your hands on me
And bless me.
Be with me Lord Jesus
At home and in school.
Thank you for my parents, my family,
My teachers and support workers
And all those who are helping me.
Thank you Jesus,
Vernon Corea was a Lay Reader in Wimbledon, England
Vernon Corea presented 'London Sounds Eastern' (Produced by the late Keith Yeomans) on BBC Radio London 206 in the late 1970s and 1980s.
Vernon Corea's Prayers for Autism
Saturday, January 31, 2009
And so it goes...four nights out of the week. My little alarm clock comes and wake me. What a sweet quiet alarm clock....
He's drinking his "tea" right now. It's actually warm soy milk, I don't know what's going on, but these kids love hot soy milk...brings out the sweetness.
Friday, January 30, 2009
So here it goes.
I won't get into the first signs. I won't get into the green our vaccine debate. What I will say is each child/person is different. I'm not a curebie. I'm a mother, a niece, and a cousin of people with autism. My ultimate goal with my children is to make sure that they are happy, well-adjusted individuals and also, to ensure that they lead happy fulfilling lives.
So, shall I begin, from the middle. It makes it all the more mysterious. Wouldn't you agree. I have a smart, funny, ostentatious, and strong-willed, 17mos old little girl. A perfect daughter, everything a mother could hope for...a strong girl..they hold up the world you know. I also have a son. I never could have imagined a more amazing son. At the moment, he's 30 mos, two, for those people that hate the month counting. Yes, he was diagnosed with autism, pdd-nos to be exact, but seriously, does it really matter? Anyhow, he's smart, funny, huggy, and warm. I never knew that having a little boy would well up my heart as it did. I used to be so "punk rock it hurt". I was hardened. I never cried. Life was rough, but I got through it...unscathed, barely. And then this....
autism. And no, it's not like you think.
The funny thing is...I kind of new that something like this would happen to me. It was a 9th sense I suppose *yes..there are actually eight. "Mommy instinct" as many have dubbed it. Whatever it was, I felt like something was different. Not wrong...just different.
Perhaps I was lucky. I never had a notion of what children were like. I guess I was lucky in that way. I assumed that all children needed to be taught, everything, including play. I was the nutty mommy that kept an arsenal of books of what to expect...hell, I even had a list on the wall of milestones that my child was supposed to his every month. With that and what I knew about autism...it wasn't hard to figure it out. Unfortunately, it was a little harder for the doctors to figure it out...but like I said "as God as my witness...I will not rant."
I guess we've gotten to touch base. Gotten to know eachother a little better. Perhaps next time we can talk about what's going on in real time. I will try to leave tidbits of info now and again. Links to interesting things. Glimpses of what's going on in our lives.
I will promise you this...I won't fairytale my life. I'll try to "keep it real". I've never put on a facade and I don't intend to start now. I will say this, I don't believe that life could have any better and I don't believe that I could have been blessed with more amazing children.