What Autism stole from us

Last week Photo day did not go well. He did not like the noise in the crowded room of a bunch of kids, a photographer getting them riled up (trying to get them to smile), and a room full of aides and assistants adding to the chaos (trying to help), and a powerful camera flash in his eyes. He would not sit down for the group picture. Just would not. So I picked him up and called it a day. I wasn't going to torture him so I could get a class picture. And I didn't want to ruin it for the others who were sitting. I was teary eyed. I won't lie. I was disappointed. That moment of group photos was added on the Crap Autism takes Away mental list. As my husband said, it's going to be a long list and we need to toughen up.

I carried him out of school and he kept on saying, "I'm sorry mami, I'm sorry." He was started to get upset. As I hugged him close and reassured him, it really wasn't a big deal anymore. He's made so much progress. He's speaking, he's learning proper pronouns, he's starting to read, he knows so much stuff, it's rather fun discovering my son's intelligence at this age. So Autism may have stolen a lot of moments that other "normal" parents take for granted and part of me will always be hurt by that fact. But I have to learn to appreciate the other stuff too-- well not the difficulty with transitions or 2 step directions-- the sweet stuff, the non autism sweet stuff this little boy is capable of. Possibilities. F the stupid Crap Autism Takes Away list.

P.S.
Later this school year before school is out, I'm going to go in and take a picture during recess of the kids playing around and being kids. That's a picture that I want to keep for his school album. I'll take some pictures with his teachers, his aide, his classrooom. He's used to me taking lots of pictures of them.

Vaccine Exemption in PA for Preschool

Vaccine Exemptions for PA Pre School

Last Thursday, my school returned from school with a legal notice asking for proof of shots and proof of being seen by a doctor for the annual health check.  Hmm, here we go. First, please realize you will get a formal legalise sounding notice asking for health forms signed by a doctor and “proof that your child’s immunizations are up to date in order for your child to continue receiving services at . . .” All very intimidating to the average parent. Except I don’t think I am an average parent anymore. I’m an angry parent who feels I was mislead by our pediatrician because they didn’t warn us about ingredients or side effects.  Second, in PA you can have exemption from immunization for school age children based on medical exemption and religious exemption. Additionally, you have the legal right to object to a health screening should you so choose.

For those of you who live in PA and want to know the vaccine laws in our state here it is, pasted from:

Here’s the code-  http://www.pacode.com/secure/data/028/chapter23/s23.84.html

§ 23.84. Exemption from immunization.

(a) Medical exemption. Children need not be immunized if a physician or the physician’s designee provides a written statement that immunization may be detrimental to the health of the child. When the physician determines that immunization is no longer detrimental to the health of the child, the child shall be immunized according to this subchapter.

(b) Religious exemption. Children need not be immunized if the parent, guardian or emancipated child objects in writing to the immunization on religious grounds or on the basis of a strong moral or ethical conviction similar to a religious belief.

 

Source

The provisions of this § 23.84 amended through September 17, 1982, effective August 1, 1983, 12 Pa.B. 3288; amended August 22, 1997, effective August 23, 1997, 27 Pa.B. 4317. Immediately preceding text appears at serial pages (164332) to (164333) and (129145).

Cross References

This section cited in 22 Pa. Code § 11.20 (relating to nonimmunized children); 22 Pa. Code § 51.13 (relating to immunization); 22 Pa. Code § 405.49 (relating to immunizations); 28 Pa. Code § 23.85 (relating to responsibilities of schools and school administrators); and 28 Pa. Code § 27.77 (relating to immunization requirements for children in child care group settings).

Did you catch that? “Strong moral or ethical conviction similar to a religious belief” remember that if you don’t have a religious or medical exemption. Basically this is a philosophical exemption written into the religious exemption. At least that’s how I and many other PA parents read it.

 Here are some sites I found to be helpful-

http://experimentalvaccines.org/vaccine-exemption-forms/

http://www.nvic.org/Vaccine-Laws/state-vaccine-requirements/pennsylvania.aspx

I really liked this one because it provided an alternative form to provide the pediatrician or daycare. You know they make you sign a liability release and it reads how dangerous it is to not vaccinate etc etc—according to PA statutes- there is no “formal” form- a handwritten statement from the parent stating it is their religious belief should suffice. So don’t let them intimidate you.

http://vaclib.org/exempt/pennsylvania.htm#preschool

Hope this helps those who have chosen not to vaccinate.  I don’t want to argue or debate this. For our family, we have chosen to stop all vaccinations. My son’s last vaccination was at his 2 year well visit, my daughters last vaccination was at their 9 mo well check. I regret ever vaccinating my kids and if I’d been a better parent I would have been more proactive about researching vaccine safety. But I can’t change the past. I can only move forward. Do your research and make the best informed decision for your family and respect that others will choose to believe differently than you. We are all parents trying to do the best for our kids.

Romance novels

Romance novels are probably 80% of what I read. Earlier today I was sitting at the Y waiting for JD’s gymnastics class to finish, reading a historical novel that takes place in the 1800s about an interracial couple and their children growing up right after most Native Americans were sent to reservations. It was a wild west historical, very nicely written in case you're interested, called Reckless Love by Madeline Baker. There is a point to this, I'm getting to it. Bear with me.

So there I am sitting, periodically looking towards the door hoping it’s going well and cringing at the thought that this might be another activity that does not go well. This isn’t a special needs class, their teacher assured me they’ve had many spectrum kids in their class before and they should be fine. Frankly, I’m not reassured and am worried but we decided to give it a try. Maybe I’m brave, stubborn, or crazy. If you’ve read my blog for a bit you know that we have struggled with getting JD to enjoy and cooperate in a sports group activity & I’d given up on it for the summer and spring. I have no idea why I’m trying again. Perseverance or insanity.

While reading, I think about the challenges my kids may face. My kids are biracial, I’m Guatemalan and my husband is Caucasian. We've come a long way since the civil rights movement. I don't worry too much about racism. I'm not saying racism doesn't exist, I fear that may never end. I'm saying that I hope to raise them strong enough that their self esteem isn't affected by it. Whatever challenges and disabilities they may face in their lives, I don’t want them to care about others opinions, I don’t want them to feel belittled and I never want them to feel ashamed of themselves.

Then I thought, what if they read my blog! Crap! I’m always venting out my fears and frustrations. I mean, that’s why I started the blog! So I started planning this post because I want the kids to know that I am so happy to be their mom. I want them to know and see in writing, that I am not ashamed of them, I’m proud of what they’ve surpassed and of who they are becoming. I am sure as they grow there will be moments of parental pride and moments when they will make me want to bang my head because of their teenage pranks. I don’t ever want them to think that all of my venting and frustrations in any way indicate that I am ashamed of who they are or were as children. Sure we have challenges; it’s not easy to be raising 3 so close in age on 1 income. Our schedule is insane between therapies and doctors appointments. Yes my life is so very different from the pre-kids days, they are my 1^st priority. This is how it should be.

I spent so many years not sure if I wanted kids, knowing I wanted to establish a career before having them, then I spent married life wanting kids and hoping it would happen on its own. I remember the emotions I felt as the nurse confirmed my pregnancy over the telephone, the first ultrasound, all of those pregnancy moments. I didn’t have easy pregnancies—both times I had high blood pressure and pre-eclampsia. With the twins I also had gestational diabetes. Both times I was induced about a month early as a result. But I loved being pregnant, it was emotional and just lovely.

So kids, years from now if you’re somehow reading my blog, I am not ashamed of you. Truly, God blessed me when he made me a mother. But parenthood does not come without its challenges and this page is my way to vent my emotions because frankly I’m tired of talking about autism and delays with friends and family. I’d rather just write about it.

Beware- Pumpkins in the air!

Yesterday I got kicked, spit on, yelled at, hit, had a pumpkin thrown at me (a little one but still oww!), was told I didn't like him and that I was scary (I've learned to tune this out because it's just his way of expressing frustration), and the finale-- stripped of clothes and diaper and peed on his bed so that he wouldn't have to nap. Never mind that we'd been sitting on the potty for 10 minutes fighting for him to go potty. Potty training is not going well but I refuse to quit. He will be potty trained; I will not cave on this.

It was a horrendous day. It was Day 2 or 4 of migraine from hell. I’ve been surviving with lots of tea or coffee and Excedrin. I can’t take my usual Imitrex because I’m breastfeeding. So at lunch time (well my 3 pm lunch time) when the kids were napping, I brought out the wine and has 2 glasses. It mellowed me out. Headaches are the worst. No, I take that back, you know what’s the worst? Having your child screeching at you at the top of his lungs, banging on doors and walls like a maniac. These rage fits—where are they coming from? What the hell is causing them?

I wonder is this because he doesn’t want to use the potty? Or is this neurological? My instinct is to take him to see the neuro because these rages scare me. I’m scared he could really hurt himself. Frankly, I’m scared I don’t have the tolerance or patience. Honestly, if this keeps up I might need some medication—FOR ME and maybe him. I spent the day fluctuating between practicing my “I’m not angry and must be emotionless” 1-2-3 magic parenting style voice, crying in the bathroom, and wondering what the trigger is. It seems to be potty training. Sigh. This is so difficult!

I’m putting him back on the digestive enzymes and probiotics. We fell off our supplement regime and suddenly the rages are back. In the meantime I’ll keep plugging away. But I’m hiding all the pumpkins. Those suckers hurt! Oh today, the worst part was when I hyper extended my elbow and JD proceeded to step on it. The pain was horrific and it still hurts. But he really didn’t do it on purpose, he was oblivious to it.

Something odd- last night he was recapping his favorite part of the day like we always do. His recap—he was telling me about something that never happened. So does that mean he can’t remember what happened during the day? Does it mean the day’s a big blank? See—that’s why I’m wondering if I should take him to a neuro, to rule out seizures. But then today he apologized and gave me a hug each and every time his fits of anger and meltdowns were over. So he’s aware of his meltdowns. I dunno.  I am clueless. Keep on swimming. Not much else to do right?

Fear & A mother's love

If you already have one child with a disability and you're going through the diagnose stage with a second child, can you still grieve? Can you still go through the process or is it a 1 time deal thing?

Are the stages shorter? Or is the pain and blame game twofold? How is this stupid forsaken process different? If I stop and think about it I will cry and regrouping will be a b*tch that may require medical intervention for me via some happy pills that cure anxiety and perhaps some therapeutic liquor on especially difficult days. I am the mom, the primary caretaker, the one who felt their first movements and I have to buck up because I don't have time for the pity party, I have to keep it together because my 3 babies depend on me. I don't think its right that I should have to go through this forsaken process more than once, if at all. Shouldn't a parent get a pass if one of her kids already has a disability? And why do any of my kids need to have a disability? Why couldn't that have skipped our home?

Apple has been receiving physical therapy since she was three months old. She's logged over 150 PT hours over that time. That's hard work for a baby. She's now also receiving occupational and speech therapies. She rolled over when she was seven months old, crawled at 11 months, and started walking at 18 months. At 20 months she's only clearly speaking 5 words and 5 approximations but her receptive skills are much better than that. Needless to say she has not had your typical development. What is causing it? Why can't she be a normal developing baby? Her twin is developing at a "normal or typical" schedule. Is it all because she had torticollis? Is there something else causing all of this and what else should I be doing?

This is so difficult and yet it is in a way easier to process because we've been through this before with my son. So I now know to be knowledgeable, be proactive, to advocate for her. And I have been. She is receiving all the services she needs to develop and now the more elusive diagnosis is the only frustration. Let's not discuss heart ache. I doubt I can ever fully explain that. It might be a have to know one to understand it fully. The pain and guilty-- those feelings can't be shared.

I don't think we're dealing with Autism here. This isn't denial. I've been filling out the MCHAT questionnaire pretty regularly for her. I even ask her therapists if they see any symptoms or signs. Apple is clearly a social child, she makes eye contact, sure she does this weird thing where she point with her middle finger, but she also has a pincer grip and is showing a left hand preference. She's a sensory seeker but it is age appropriate. She plays well with other kids her age, she plays well with her siblings, she's interested in other kids and her environment. Despite her gross motor delays and suspected gross motor planning problems, both her early intervention team and us (the parents) do not see any social delays. Nor do we notice any cognitive delays. It is so frustrating!

The worst is not knowing. You can only fear the unknown. All very trite and yet so true. It is a ticking time bomb because the undiagnosed can have a really bad name. But I still want to know, I've never been a coward. I've always been me-- aggressive and determined. So I want to know this unknown beast. I want to know its name and its everything. Because there is no way it's going to have my baby without a fight. I'm not going down without a fight. So whatever the motherf*ing name these symptoms all add up to, it's not going to win. My baby, all three of my babies are going to have a normal childhood and dammit they're going to have a normal life. It's just going to be our version of "normal" and maybe I'll shed plenty of tears throughout this battle, maybe the hope and dreams will take a beating, but this mofo isn't going to win, not in our house. Please God give me the energy and the faith to keep on going, because that's all I can control.