Positive Parenting #fail

I’ve had a rough couple of weeks. I have been feeling – a plethora of emotions. I need a break! I might be hitting a new low. It is my turn to cry and my husband’s turn to reassure me. We like to take turns because if we’re both at a low ebb—we’re in trouble. I wonder if I need to go on some medication or if this is seasonal depression.  I am overwhelmed.

JD’s behavior remains inconsistent. I struggle with differentiating sensory reactions from misbehaviors and so I am inconsistent with correcting the misconduct. I know what to do with most of the sensory reactions and I have a lot of guidance from his support staff and therapists. I struggle with how to correct his misconduct.  Am I expecting too much from a four year old? I am scared of turning into the mom that makes too many allowances for her child because of the child’s disability and end up with a spoiled child who thinks he can get his way.

Sometimes I hate the parent I am turning out to be. I hate when I yell, I hate when I lose my cool. Why can’t I have more patience? This is not who I thought I would be. How do I change it? I wish I could devote more time to all of them fairly. I run around turning off fires, reacting to outbursts instead of being a more involved parent. Do I expect too much of myself? How do I CLONE myself?

I bought some positive parenting books for suggestions. I have tried them and the results are inconsistent. They look like meltdowns but they’re really tantrums. Trust me, they are. You would have to know my kid to know he’s smart, he’s wily, and he knows what buttons to push. How do I know? There is a specific cause for the reaction and it is not sensory. Or maybe it becomes sensory. Who knows?! I feel like screaming and I feel like I am failing my kids.

new leukemia treatment

I read about a new treatment against leukemia yesterday. It uses altered HIV cells and has shown some success. Here's the link. I immediately thought of my dear friend Erik, whom I lost to leukemia when I was in college. To say Erik had been my best friend would be too simple, I miss him. I will always miss him. He had a great smile and wicked sense of humor. I hope this new treatment is able to save so many suffering from cancer. I can't help but think, why couldn't they have had this treatment when he was still fighting against cancer? Would it have helped?

I admired his courage when into his 3rd bout of chemo he decided to stop all treatments and go home to prepare to die. I'm thankful we had that time. That last night we were laughing and joking. I knew he was in pain and I felt so useless and hopeless. We were laughing about something and I was holding him when he passed. So many years later and I can still cry over that moment. After the funeral I went right over to my husband's house (we were dating at the time) and just cried. Some friendships, some losses you never get over. For me, losing Erik is like that-- a wound that's scabbed over but it's still a wound and very much a loss keenly felt even after all this time.

Cancer research and treatments have come a long way since my grandmom died of breast cancer in the late 1970s. It has come a long way since the late 1990s when I lost Erik. It is encouraging to see R&D discover new options for those fighting cancer. I hope those going through cancer treatments fight it and I hope this new treatment gives kids with leukemia a chance to beat it, even when it comes back a third time in their late teens-early adulthood as it did with my friend. I pray those friends going through treatments, especially Meg and Jess, know we pray for them every night and continue to hope that their story is a success story.  That's all.

Everything is gonna be alright. . .

According to Google there are either 5, 7, 10, 15 steps to Grieving. Of course then I did a search for Grief and Autism and stumbled on a new blogger. The Spectrum Mom has an interesting post- http://ssjatreptow.wordpress.com/2011/06/15/stages-of-grief-after-autism-diagnosis/

When you google Autism, you find so many blogs, parents just like me writing their pain and frustrations. Denial, Isolation, Anger, Bargaining, Grief, Acceptance-- all the stages of grief.
Why am I going through these stages?  Apple is not on the spectrum but she does have motor planning issues which are causing speech and motor delays. We're going back to Neuro in February for some guidance. In the meantime, according to Bob Marley & my husband, Everything is Gonna be alright! And right now I need encouragement because I can feel myself sinking into a pity party moment. Why can't my kids have it just a bit easier? So here are the stages I'm going through:

Do I still grieve? I will always grieve. On a daily basis, at least once, I think how much I hate Autism, how much I hatethat my son has to overccome so many difficulties. I would take it all away in a second. I would. As well as JD is doing, as well as things are going with his many therapies and everything ASD, I would cure it if I could. I wish things were easier for my son. What parent wouldn't want to take away a hardship from their kids?   For me, I will forever grieve the hardships he's encountered and those yet to come. I will always grieve for how difficult things come for my baby girl too. She may not have Autism, but she does have delays and we may not have a specific reason for the delays, but she's still not a typical developing baby girl. And of course I will grieve for that. I hate that two of my children will have extra challenges and who knows how many crying moments because of their medical conditions.

Isolated? Not so much. We've made some ASD friends. I've made some very good ASD friends and JD has made some very good special needs friends at his school. I joined a mom club. So I don't feel we're as isolated. Although sometimes our schedules are so crazy that it feels like we're isolated. During a bad day it can feel like the loneliest planet. Particularly so, if you don't have a strong support system.

Bargaining? Yeah, still do that nightly. Something like, God heal my son, help him make progress, help me help him, cure him, God please make everything ok with Apple and make my Achalasia worse. They're just babies, please please help them.  Although, I don't bargain so much anymore because its rather pointless and selfish. We pray for our friends and his friends at night. I have to say my son is a good prayer. I love that he's building a relationship with God. We're not regular church goers but I hope to be once he's older.

Acceptance--that's a toughie for me and the meat of this post. This is where so many of us Autism parents defer on. Yes I accept he has autism. I live it each day, I don't need another diagnosis to accept reality. Our reality is that my son has Autism. He will always have it. There is no magical cure, there is no losing the diagnosis. So yes, I accept that. Do I like it? Will I ever love it? No, my acceptance doesn't stretch that far. Thus the grief. Thus the fear!  I will never be one of those parents who say we need to be positive and love and embrace Autism. I'm sorry if you find that offensive, but I just am unable to accept and buy that load of crap. Loving my child does not mean I have to accept that level of thought. I feel I can accept and love my son without saying that I love Autism.  (Gasp, nope, you'll never ever hear me say that!) My daughters delays?  Yeah she has them, we have so many therapies because of them. I'm not in denial. But I hate the delays and they scare me. I wouldn't ever say I love my having Achalasia- I hate it. So why should I say I love my kids challenges? But I can't change it. It just is and that's my version of acceptance with their challenges.

I've had Bob Marley singing in my head for days now. So I'll leave you with a pretty good song. All I need is that beach spot in Aruba & a nice cold drink.

The Bat S. Crazy Aunt

11/26/2012

I am grieving the loss of my best friend. Usually when you get on my shit list it’s a life sentence. I may forgive because it’s healthier for me, but hell will freeze over before I forget the lesson learned- ask the fam. With my friend who was not just my best friend but as close to another sister, I figured I should keep trying.  Then I remembered my crazy aunt and a Christmas memory. I realized I didn’t want to do that to my best friend’s kids.

I divorced my aunt on my 8^th grade graduation. My aunt is either bipolar, or has a narcistic personality disorder, or is possessed. Sorry not funny right? My memories of her are like bipolar vignettes; from her strong laugh to standing in my living room with trash bags full of clothes having left her drunk husband in the middle of the night—again. She was always such a complete and utter bitch towards my mom and sister. Sorry if it offends but trust me, no other word here.

Here’s an example of her craziness: I have a photograph of my cousins & I, bundled up against the cold, playing in the snowy school yard during an early dismissal, waiting for her to pick up my cousins.  Crazy aunt was pissed that my sister & I had waited with my cousins so they wouldn’t be by themselves in the school yard. Weird and mean right? Told you—wacked up crazy when she’s having a manic spell. I vividly remember how angry I was when I saw how upset my sister was. She was barely 18 and my aunt had upset her so bad that her hands were shaking.

The final straw for me, the time that I said to hell with them all is at my 8^th grade graduation when I was so proud to be valedictorian; does the crazy aunt not go bat shit crazy and go off on me as she walks into the auditorium? As my friend Louie held my hand I closed my heart to them. Basically a 13 year old boy has more empathy than my bat shit crazy aunt.

That Christmas memory I was talking about? It was over Christmas presents. Whenever crazy woman was mad, the girls couldn’t talk to me, nor accept gifts apparently. My mom shows up with presents at the crazy woman’s door and gets the door slammed in her face. This enrages my dad and well you get the picture here. Dad took longer to distance himself away from her (his sister after all) but we’re all distant from them now. Can only put up with crazy for so long.

I am distancing myself from my former BFF because of what my aunt taught me. I miss her kids like crazy. I’ve loved those kids since they were born.  As I was going through Christmas gifts, I realized I did not want to put her kids in an awkward position of having to choose whether or not to take my presents, or whether to talk to me. For now, maybe space is for the best.

My happy place, where I go to when I'm trying to ignore the bad stuff. Aruba 2007.

 

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.

One year later, life is good

My toddler turned 4 over the weekend. He's gotten really tall and lanky. We had a fun weekend; birthday parties and Sesame Place, good times. On Sunday night I burst into tears-- well sobs really. I don't even know why because we're having a good spell right now. JD's behavior is a lot better, the girls are easier to manage, I've got a good handle on the kids needs, hubby and I are best friends once more, the house is less cluttered, my life is less cluttered, things are good. But this knock you on your knees grief kind of embarrassed and surprised me.

I calmed down and thought about what was upsetting me. Sure I seem to have lost a friend after 20 years of friendship, my best friend fired me. I'm a little unclear as to what I did but regardless, I officially have 1 less friend and 1 more acquaintance. I've picked myself up and moved on, one thing I know is that you can't keep people who don't want to stay in your life. I know that friendship is changed regardless. I put my faith and trust in someone who never considered me a trustworthy friend-- those lessons can't be unlearned. Sucks. But no, that's not what made me cry. I thought some more, I think its from happiness! Yes happiness made me cry like a nut! Let me explain.

I'm relieved that the kids are doing so well, emotionally it's been a really tough year for us. I think my husband and I are walking around with anxiety and post traumatic stress. While things aren't perfect, at least we're in a much better place, we recognize our weaknesses. Having your child diagnosed with autism can be traumatic. Having one of the twins developmentally delayed is very stressful. Sure the diagnosis doesn't change your child or your love for them-- but suddenly you have therapies and evaluations. Your house has a revolving door, clean & organized house- who the hell has time for that? You exist from one eval to another, from one therapy to another in a desperate fight to gain some progress, to regain speech, to "achieve" normal. But nothing is normal, nothing is the same, your life and expectations have changed forever. Even your relationship with your husband isn't the same. Suddenly you find yourself less patient, not talking as much, its hard to be a couple when you feel you need to put everything you have into your children's progress and well being. To the point of excluding your hubby.

I'm not especially happy or proud to say that, but that's what I instinctively did. It got so bad that we talked about divorce, separation. But that wasn't what was best for our children or for us. I don't want to go to work full time and risk losing all the progress the kids have accomplished just because I can't seem to get along with my husband. Hell would freeze over before I ever took alimony, I have too much pride and frankly a damn good degree to ever let a man provide for me. So I went searching for a cure all. I didn't have the energy for a divorce and I doubt that would make me any happier or any less stressed. I talked to my former best friend, to some other close friends, to my priest, to my online mommies group, and no one could help or make it better. No one could help me come up with a resolution. The fact that it got that bad, that things were so stressful at home, I mean we didn't talk, for weeks! All summer we tried to be parents, to be a family, but we weren't really a couple. But that didn't work.

I remembered something my mother in law told me when my hubby and I were planning our wedding. She told me that during stressful times we had to hold on to each other, to our love, and it would get us through. So I decided to forgive, forget, and strive for more patience, to strive to love my husband. And then I realized I needed to be a couple again, to be friends, to be what couples in love are-- they talk!  I needed to learn how to let go. We're at a good point-- all 5 of us. It's been an emotional year and I'm thankful we've learned from it. Life is good. Oh and I told off the people that needed to be told off, including my limpid father in law. I am making a point to exclude negative people, those who walk around with a rain cloud over their heads, out of my life, they only bring complications into your life. Life is better right now.

Chicken soup for goals

My goal for JD is to have him start mainstream kindergarten, with an aide to help with his behavior and with transitions. We have 2 years to try and make that goal a reality and I don't know if it'll happen. I used to worry that I'd be upset if it was never achieved. Over the weekend, I came to the realization that I would be fine. What lead to this epiphany?

We've all been sick this weekend, the girls have had a stomach bug, JD & I have had a cold, hubby seems to have a stronger immune system than us guppies so he's not feeling as bad. JD has been whining at night, his throat hurts, he's congested, he coughs-- he's a almost 4 year old and he is never at his best when he's half asleep, he becomes almost non verbal and his awareness is minimal. I was so frustrated at one point trying to figure out why he was crying, all I wanted to do was take away his pain, and he was just curled into himself on his bed crying refusing or unable to answer. Turned out his tummy was cramping and an upset stomach that was the culprit. Boy was that fun--explaining what vomit is and trying to calm an almost hysterical boy while he's half asleep. It made me realize how much worse autism can be when you have someone who isn't verbal and who can't communicate.

Please don't read this as pity or condescension-- it isn't at all. More so, it's the exact opposite. I am in awe of all Autism parents who can't communicate with their kids verbally, who have kids who won't respond when spoken too. I was so frustrated and worried trying to figure out the source of his pain. I felt so useless and panicked. It made me realize that what we deal with, it's not so bad in comparison. Sure I have my hands full, but JD is a really good kid most of the time, he just needs redirection often, and he's progressing so nicely as he grows. I am so thankful that JD has come such a long way in his vocabulary, he's already come such a long way from our pre diagnosis days that how can I not be thankful? So if we don't meet my personal goal of mainstreaming by kindergarten (and let's be honest that is my goal not JD's, he could care less, he doesn't even understand what that is), I'll be fine because many other kids with autism have it much worse, have been working towards progression for much longer than us. So I need to be thankful for what we've been given, for what is, and stop worrying about the maybes. And how apt that I even have a lovely bouquet of roses to smell!

On Saturday, JD & I went to Shoprite to get chicken soup ingredients and while there they were having a dog event outside in the parking lot. I wish I'd had my camera with me. I know I'll forever have this image in my mind-- JD flapping his hands and twirling in excitement as he was licked by a 3 year old beagle. "Mommy, doggy, doggy!" Smiling his million watts smile that will forever melt my heart. I love this kid so much, sometimes I wonder how my heart doesn't burst from the emotion.  I called hubby from the produce section so excited for my tots happiness of the moment.

OT Sensory Tips and Ideas

Need a cheap sensory toy? I bought light up balls with pointy edges in the toy bargain section at Walmart for $1. I bought about 6 of them. All 3 kids love them.  Toysrus and Target have them too, check their $1 section bins.

Searching for exercise ball to help your little one relax? Most Family Dollar stores or 5 Below stores have them. Don't fill them up too much or your kid will be on the floor. Leave them a little flat so they can bounce and sit on them easily. The toy sections in most stores also has bouncy balls with handles, some with cartoon characters for the kiddies! Another option are those inflattable punching bags. They were huge in the 80s and are making a come back but they call them Bop Balls nows.
I found some on clearance at Big Lots and I saw some at Target on clearance too, in the summer toy aisle.
http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Dtoys-and-games&field-keywords=inflatable+bop+bag

How about a sensory mat?  Ikea has these cloth seats called Sagosteen in the kids section. We bought the one with a star on it. Put padding in it and you have a crash mat for sensory input. Don't forget to buy the padding! http://www.ikea.com/ca/en/catalog/products/20166754/You can also try those plastic inflattable chairs at the discount stores and use those. Although we go through a lot of those.  try not to pay full price for those. http://www.target.com/s/chair+inflatable+kid?ref=tgt_adv_XS000000&AFID=google&CPNG=furniture3&adgroup=kids+furniture&LNM=Chair%20inflatable%20kid&MT=broad&LID=30p4742176&KID=5b5da096-90ea-8089-bbca-000076da5103

You can also fill up a bunch of balloons or plastic balls and put them under the bedspread-- your kid will love it. If you're looking for those plastic balls from ballpits-- check out craigslist, ebay, or consignment sales.  A lot cheaper than when bough new. Just fill the tub with some bleach and it'll disinfect them. A bean bag that gamers use is also a good crash mat. Or if your kid is like mine-- a good old fashioned pillow fight or cushions from the sofa and you can have all the sensory input and lots of giggles you need.

Flour and salt, pasta wheels or elbows during craft time, playdoh, epsom salt baths or oatmeal baths for sensory input. I give JD epsom salt in his hand-- especially the clump and he dissolves it. We just did it tonight to calm him and his upset tummy down. He loves the sensation of the abrasive salt as it dissolves on the tub floor. JD loves playdoh. Add some salt/sugar to it for extra input. He loves playing with ice cubes and water too. Of course that makes a bit of a mess so that gets annoying.

I've been looking for a weighted vest idea that I could do myself. So I've bough some rash shirts-- those swimwear tight shirts and JD can wear them underneath his clothes, kind of like compression shirts for sensory input. Go buy a sweater vest or vest and sew in weights and you've got a weighted vest.  I've also been relying on Pinterest to help me find some ideas for this. So if you're looking for sensory toys or things to use-- don't forget to check Pinterest or to think outside the box.

Hope these ideas help!

Potty Train, Hands off the P. . .

You know how we're potty training all 3 over here in Twingle house? I'm not crazy, just being practical! The girls are walking so why not? Apple's speech therapist inspired me. She has a client who has down syndrome, non verbal I believe and can't hold herself upright but she's potty trained. She's younger than my girls, so if that baby can be potty trained surely my 3 can be too! I was inspired and I'm on a mission to get out of diapers. It's expensive to have 3 kids in diapers. We buy 2 cases of diapers a month on our tight budget. I NEED them to be potty trained! But will I survive the training?

My goal was to potty train while we were on our 3 week break in August. Well that didn't work. So now we started with school. We are using Good Nights and Pull Ups, no diapers because he's a big boy and big boys use the potty train. http://www.amazon.com/The-Potty-Train-David-Hochman/dp/1416928332- Great book. I think I know it by heart.

Our routine- Potty in the morning, twice at school, before & after each meal, before bath time at night. If he actually goes in the potty he gets 2 stickers to put on his reward chart ($2.00 for stickers & chart at the dollar section in Target). 1 sticker if he sits on the potty the whole time (meaning I don't have to chase his naked butt down the hallway). We read all 3 of his "potty" books while he sits in the potty & we sing the ABCs and he can get up when he's done singing. Sometimes (AHEM, Usually) he fights sitting on the potty. Once we've wrestled and he's sitting we fight about getting off, flushing over and over, unrolling and throwing toilet paper, putting stickers on the toilet seat, kicking the bathroom door, yelling. Its all sorts of fun. Oh and the new one-- squirting while peeing because its like a "hose". Good Lord child! Once I'm exhausted and whimpering  I have to sit the girls on the potty too.

Last night I went in to check on the kids before I went to bed--JD was soaked! JD and his fascination with all things underneath the pullups and good nights- yes I do mean that. He says it feels nice, I guess so. Well it causes leaks when the pullups aren't pulled back into place. I changed him and he slept through it all! Now to wash the sheets again. It's become a daily morning routine. I consider it a win if I can get him to sit in the potty most days. A morning where he sits in the potty and transitions to school without a scream, kick, or argument? Priceless. At least we don't get "looks" in the parking lot. Well we do, but only because I star in my own baby parade with the stroller and the tot. Not the other type of look where I'm the bad parent.

I leave you with our newest funny and one my hubby will probably wish I hadn't shared but you guys get it right? We have to laugh.

Since we switched to pull ups and Good nights:
"Buddy its private and not in the store ok?" And there he is hands in his pants at the check out. Usually happens there for some reason, guess when he gets bored. Go ahead, its funny. He does it while he's watching tv too. "Buddy that's private, only in your room." Oh and this prompted an interesting conversation about our stance on masturbation, religion, and calling body parts by proper name. My stance-- its all good unless you're hurting someone or can get arrested for public indecency/lewdness. So gotta teach buddy boy that it's private!

Apparently my "stranger touch" conversation was a bit too confining. His teacher and my sister were told by Buddy Boy that "don't touch my penis, only mommy and daddy." Hmm, need to add unless its the doctor, teacher, or family. "Mama, Ms. Teacher can't touch penis,its not good. JD is better." JD speak for they can't touch me, only I can."

Strolling along anywhere "Buddy, hands in pockets."-- it sounds better than "Don't touch your Penis." If I keep saying that in stores I'm going to get looks.

Oh and in case I haven't said this enough, I don't give a flying F*ck about anyone's opinion on my parenting. I am doing the best I can, I might never win Mom of the year, I'm sure I screw up at least 10 times a day, I might never win Wife of the year either. But I love my kids and my hubby and I'm doing the best I can. Until you live here and walk the walk, stop talking out of your a**. Nobody gives a damn about your unhelpful and often ignorant opinion.-- Yes Dear Lady at the Walmart, this is for you.

Making Friends

Nothing is as contagious as my son's sense of humor. Nothing quite as exasperating as his stubbornness or his high pierced scream when he's arguing with me. The way his eyes twinkle and sparkle with glee over something fun or when he's thinking of misbehaving. All these unique parts make up my wonderful little boy. When he can't make friends, when friends snub him, when kids don't want to play because of his social challenges-- it breaks my heart, it really does.

 

JD loves to play with kids & he loves play dates. But he struggles with the greetings A LOT! He needs to be reminded each and every time to say hello, state his name, and ask if they want to play. His excitement gets the better of him, his speech goes a mile a minute, his slaps his hands over his wrists (his version of flapping), he stomps his feet sometimes too. JD tells me it doesn't feel good-- meaning it doesn't feel normal for him to do the "normal" greet. He's very vague when I ask him but he seems to be trying to express that discomfort. He says "say hi is not good, playing is better. I say hi and then play. Say hi and name is bad, not good." Expressing his emotions is difficult, although that itself is not atypical for a toddler. Toddlers aren't very good at explaining their emotions.

 

This past Thursday we were at the playground for Apple's PT (our therapist met us there) and an older girl who didn't want to play or be chased by JD called him weird--you should have seen how fast my head whipped around! I was ready to eviscerate her. What type of parent does this little girl have that she thinks calling kids weird or anything mean is appropriate? Then I took a deep breath and I reminded myself she's a little girl and I shouldn't be mean to her. I've met grown people, some supposedly friends, who don't understand that we can't be mean or use people when its convenient. 

It was fine to play with him for 5 minutes but now not so much since my kid beat her at tag?

 

I said he's not weird, he's a little boy who wants to play, he has autism and he has a hard time greeting and calming down. He's smaller than you, you should be nice to him. Calling kids weird is not nice. One of her other playmates spoke up and said his brother had autism and he'd play with him. The other girls grabbed his hand and off they went. I watched my little boy being lead back into the group to play. From then on the whole group played with my son for about an hour.

Whenever he got too excited one of the girls counted down with him to calm him down. They'd by now seen that I give him hand massages or deep pressure hugs. They asked me why, and I explained since he's little, that he needs help to know when he needs to calm down. The kids were great with him! The sounds of JD running and screaming his little head off was the background noise through the rest of our physical therapy session.

 

It was pure magic. I almost didn't want to bring them home. I never wanted it to end, judging by my sweaty smiling boy-- neither did he. As we rolled back home-- all 3 kids in their wagon, me pulling it along, I asked if he had fun. "Yes I had friends."

 

 

Possibilities

I had one of those Ah-Ha moments this evening.  A moment where I had a small glimpse of the future and you are confronted with the emotional reality. What do I mean? Well my boy has a rough road ahead, he'll have to work harder, some things won't come naturally to him. I know all of this. But today I was a front row witness to it and oh Dear Lord, it hurts! It hurts so much to be so useless.

Here's the run down-- JD will need to learn these unspoken acquired social rules. We were sitting out front, chatting with Neighbor Ted. BTW- JD loved Neighbor Ted and his dog Jack. A boy from down the block came over to say hi, riding on his bike. JD wanted to play or talk to him but he got shy and didn't know how to engage him. The boy rode away never knowing that my little boy got his feelings hurt because he was ignored. And I felt so bad for him, I wanted to hug him. Instead, I reminded him that he needs to say hi, introduce himself, and ask if he wants to play.

A little while later, two girls come out of Neighbor Ted's house sporting newly made jewelry. They are in the middle of talking to Neighbor Ted when JD interrupts them to tell them about something that happened 10 minutes earlier. First he interrupted, then he goes into his own little narration of his "conversation" and it's all being retold a hyper speed. The girls are good natured about it but he's hard to understand when he's so hyper. I intervene and remind him to introduce himself. But he ignores me and continues his story. She nervously giggles and says: "I can't understand him, what's he saying? What's he doing?"  Oooh little girl, words are powerful things, causing powerful emotions and you just made me physically bleed.

With this vignette, I realized this is what it'll be like. If we're lucky to keep this progression going, this is what it'll be like for my little guy. As my hubby reminded me, it's probably something that JD
will always have to consciously work on. You and I introduce ourselves and make friends without thinking about it. My baby will have to work at conversation, at small talk, at making friends. All I can do is uselessly sit on my front step, reassure him, but I can't fix it for him. And oh the pain of it. This hurts so much.

I don't want to cry and feel sorry for myself or my son. I remind myself that his psychologist said we're on the right road with JD and that he sees very good possibilities for him. We'll keep plugging along then. Deep breath. Glimpses of very good possibilities are nice even though some will be painful.

Is this what it's like?

My lovely girls turned 17 months old. I can't believe my babies are so big, they look like toddlers now. Where did my babies go? Boy are they acting like soon to be 2 year olds! Oh the drama, oh the tears, oh my where's my Motrin! How do triplet or higher number multi parents survive the terrible twos?  Goodness, JD's 2nd year was in a word-- traumatizing. Of course in hindsight I realize that his "temper tantrums" really were meltdowns and that some of them weren't caused by anger but frustration. In a way, his diagnosis has helped me to understand JD's viewpoint. Perhaps comparing their 2nd yr to his isn't exactly fair. At least, that's what I keep telling myself in my pep talk!

We had Apple's multi discipline evaluation last week. She's behind in motor skills and speech. She'll start her speech therapy in September. Her private occupational therapy (not from early intervention) has been increased to twice weekly. She seems to have plateaued in her walking, kind of shuffles, very unsteady, and slow. She's very quick to resort to crawling. I'm still worried sick over what could be causing the hypotonia. I worry, google is pretty scary when you research torticollis, hypotonia, speech delay. I've stopped doing that for now but do have to ask our pediatrician about some genetic blood testing while I wait for the developmental pediatrician's appointment at CHOP.

 

Apple is struggling to walk, not talking, gagging with lots of foods. While Cems, although tiny, is talking and running. Hubby and I ask each other, "Do you think this is what normal is like?" 

Let's be honest-- We haven't known "normal" or "neuro-typical" development. Until Cems we didn't know what the hell normal looks like because quite frankly we haven't had normal. With JD we knew he should have been speaking more and now with the diagnosis we definitely see that he did not develop or hit milestones at a "normal" schedule. And honestly, if we'd known about JD's ASD before I got pregnant with the girls, we would never know what "normal" feels or looks like. So to us, it feels odd, wonderful, and scary to see Cems developing on and even ahead of schedule. Because at last weeks MDE- I also did the DAYC on Cems, she's way ahead in Speech. Wonderful, awesome, and yes very scary. One day at a time and hope for the best, it's out of our hands anyway right? What more can we do? Just keep plugging along and hope to God we're doing it right.

Why scary? Because how do you know if this is normal? It's not like disorders or illnesses announce themselves. Am I being pessimistic? No, just realistic. And to a certain extent, I've been programmed to wait for the "things go to crap" moment. Life has not been perfect up until now. I am also watching Cems running and talking like a little parrot. It's tiring and oh so indescribable to be a parent of 3 and watch them all play, smile, and giggle as they tumble and pillow fight in JD's bed right before bath time. I'm so thankful to God for allowing me to be a Mother. As hard as being a stay at home mom is, it's worth it.

Meltdowns and not Autism, I'm the bad guy here

2 Meltdowns in 3 days, what did they have in common? Overstimulated, tired, out of schedule. Today's meltdown was my fault. Friday's was my mom's. Both times my mom and sis couldn't handle seeing JD in meltdown mode. On Friday since it was on my turf- they ran out horrified of me and my "parenting style." Today, I ran out of their turf- just to get to a quiet place (the van) to get JD and me to regroup and relax. Dear Mom and Sis- this website explains meltdowns vs temper tantrums. Please read it and educate yourselves. I'm not making this crap up.

http://www.educationnews.org/articles/autism-meltdowns-verses-temper-tantrums.html

Apparently no one at my parents house approves of my parenting, the behavior therapy, or the strategies I employ to get JD to calm himself down while approaching Def Con Meltdown stage. Apparently, I am rude when I tell them to back the hell off and let me parent. I have one question for them that I never got answered. How helpful and understanding and yes how loving are you being to me and JD when you tell me: I suck as a parent, the meltdown now in progress is not Autism in Action it's just a "Normal" 3 year old temper tantrum, and I'm making him act like he has autism. (Not sure what that is supposed to mean).

Dealing with my momsis, (that's their new name, they're joined together in their fight against ME!), is frustrating. It makes me want to scream, curse, cry, and run away to the other side of the country- hell a different country and never see them again. But then I'd miss them, well JD would miss them 1st. But they drive me bat sh&t crazy!  Together they're awful, they really are-- I'm supposed to pray for Autism to be cured, I'm supposed to accept his autism because it's a gift from Angels/God, I'm supposed to believe he doesn't have Autism, and I'm supposed to just let JD do whatever he wants and baby the hell out of him.

Oh and any specific autism therapies- sensory diet, food diet, supplements, behavioral, speech- is bad and I'm not doing what's right for JD. Doing time outs, calming breath exercises, positive reinforcement, redirection, counting in a quiet place until he's calm-- all stuff JD now openly ASKS for when he feels out of control or upset-- apparently they are akin to child abuse in momsis's eyes.

It is so disheartening and frustrating to have to deal with others ignorance. Especially when its family. I am doing the best I can. JD and I are doing much better than we have in terms of managing his behavior problems -in stores, therapy, school, everywhere but when momsis are around. They're the catalyst for Def Con nature! JD is getting better at explaining things and he's even participating in calming himself down by requesting a time out (HUGE, HUGE accomplishment for my little guy) and momsis can't recognize his accomplishments. I get so incredibly tired and angry of having to defend my parenting while trying to bring JD back from shut down city-- where all his major meltdowns become. I wonder sometimes, would it be better for JD to just cut those people who don't understand and who undermine all we're accomplishing or striving for out of his/our life? Is that the answer? And where's that cut off- distant relatives, cousins/aunts, or grandparents/parents, husbands? Guess I have lots of unanswered questions tonight.

Thanks for reading.

Twingle mami in Autismland: Counting my blessings amidst turmoil

Twingle mami in Autismland: Counting my blessings amidst turmoil: I will be 35 in October and life is not where I thought it would be at this point. I never expected to be so stressed and sad about finances...

Counting my blessings amidst turmoil

I will be 35 in October and life is not where I thought it would be at this point. I never expected to be so stressed and sad about finances, marriage, outlook- so many things. Was I naive? Was I unrealistic? Why is it so difficult to count my blessings lately? When did life become so hard? Does anybody really know how we get wherever it is we're heading when we've been steering in the other direction?

I am not one of those moms who will ever think that autism is a blessing. Some people say that God doesn't give us more than we can handle or He works in miraculous/mysterious ways. My mom tells me that JD is special and that Angels look after him more than others because of his abilities and that's why to us humans it looks like Autism-- implying he has some super power or super empathy. She drives me freakin nuts but I love her. I wish people would stop shoving her religious beliefs and opinions on me as if they were facts. I hate when people push their own opinions and expect us to agree with them. Opinions are not facts and opinions do not need to be accepted as a truism. People can agree to disagree. On this I disagree. Autism is not a freakin blessing! And unless you have a child with Autism, unless you live in our house and experience day in day out of raising my son, then you don't have a say on how I should view things, on how I should feel, on how I should raise my son. Don't even think to push your perception and generalizations on ME or my children. Don't presume to tell me that my parenting decisions are wrong or misguided merely because I do not have Autism.

Do not tell me what type of relationship I should have with God. That is between Him and me. My God is not vengeful, he does not make my children sick or challenged. I believe illnesses and disorders, disabilities, are just freakin rotten luck. I don't have an answer as to why his Munificence doesn't cure and fix everything. And maybe I'm okay with never getting an answer to that. Faith after all is a belief that requires no proof or substance. It simply is or isn't.

In case you're wondering I am Catholic by childhood, but I've formed eclectic religious beliefs as I've read numerous religious texts and attended various churches or religious houses. I wouldn't ever try to explain those beliefs because it's mine and significant only to me. Religious beliefs are personal and therefore I don't push them onto anyone. I don't feel the need to broadcast my faith either. It simply is.  My Catholic priest and I have lively debates. But I am firm that God did not cause or choose for my son to have Autism, just as I believe that choosing to have IVF treatments didn't necessarily cause any of my kids delays as God's punishment for choosing to become a mother. I don't believe He is testing me or any of that other crap. Somethings simply happen and we must choose to move on and live our lives and be the best person we can be. Like the army.

I thank God everyday that JD and Apple are doing so well with their therapies, that they're showing tremendous progress. I thank Him everyday and to my last dying breath for providing me the miracle of being a mother. I thank Him that my Achalasia isn't worse, that's its manageable. Life isn't easy. My day to day is eventful and more than a handful. Life is not where I thought it would be at almost 35 that's for sure. Maybe without all this turmoil the blessings would be easier to take for granted and discount. I thank God for every day whether its sunny or rainy. And I pray each day that my kids grow up to be happy, faithful, and able to live a "normal" life. By normal, I don't mean cured from whatever illnesses, disorders, disabilities-- I just want them to be able to live alone, to have a happy life, to have friends and have a job. I don't expect Autism to be cured, I'm not sure if it ever can. I'm not sure how that would happen since I believe it's really a neurological condition. Just the brain wired differently than mine. I'm just thankful that we've discovered the food allergies and have perhaps made JD's days just a bit easier with his current therapy plan. And I'm thankful my 35 weekers came home with me the next day.

But I also wish there was slightly less turmoil, less conflicting emotions that leave me emotionally exhausted. I wish life's experiences didn't affect us nearly so much that some days I don't recognize the person I was a decade ago before Achalasia, marriage, kids. I wish marriage was just a bit easier to navigate. Frankly God, I want to win the lottery and be able to eat a steak or ground beef without regurgitating it. And while we're at it, can we renegotiate Autism or at least make it easier for my kid as he lives his life amidst a difficult world? Oh and can we make it so our finances are easier, my marriage slightly less of a tempest? I'd appreciate it. I'd just like to Breathe! Thanks for reading.


1 in 88, 1 in 4, how many will that be?

I belong to an online mom group on Facebook and it currently has over 800 members. Although I have never met most of these moms in person, we have shared lots of moments together, experiences from our pregnancy through dealing with the men in our lives now that we are mommies of young babies. It's a fun group and of course with that many women there's bound to be some drama. Mostly it's a group of women who have bonded over the experience of becoming a mom. Yet as we approach the 18 months milestone, I am thinking about Autism and all things Spectrum. Well I am thinking about it more than usual.

There are 846 members in the group with about 860 babies (twins). Let's assume for simplicity that we are all from the U.S.A. (we are not, it is an international group). Now let's apply the latest CDC Autism statistics; 1 in 88 children, 1 out of 54 boys, and 1 out of 252 girls are diagnosed with ASD.  http://www.cdc.gov/ncbddd/autism/data.html/ 10 children from our group will be diagnosed with Autism.

10 babies. Each time someone posts a question about a delay, walking on their toes, hitting their head, waving/flapping their hands, you know all that stereotypical stuff- I think about these stats. I don't reply or post anything because I don't want to feel like the grim ASD reaper. But I think it. You know why I think it? Because I used to be like these ladies! I used to celebrate the milestones, each new development, and I was perfectly happy in my blindness until someone forced me to confront ASD right before Christmas. So many things have changed since then, some good, some bad, some just different. It's been a journey for not just my son, but the family. Since then, I have become more seasoned and conversely more frightened. And yet, nothing has changed from my son's perspective. He's just as happy as he was in December. Well, perhaps he's happier because he's speaking more and able to communicate with us, which is such a wonderful thing. It truly is wonderful to be able to have a conversation with my son and discover that he's such a silly boy with a wondrous sense of humor.
And he's started school and now is starting to have friends. I know I'm using this word a lot but it truly describes how I feel- it is truly wonderful to see my boy blossoming and coming into his own.

I wish these 10 April babies wouldn't get diagnosed. I wish our group would be the anomaly, but I know this is not the case. So instead, I hope these babies get diagnosed before age 2 or at age 2. Because the sooner they have a diagnosis, the sooner they can start getting therapies. I hope these moms learn how to be their child's best advocate, how to navigate early intervention, how to best help their child. But I also hope these 10 babies get extra love and attention, because they have a long uphill battle ahead of them. My girls are 16 months old and as we approach 18 months, I wonder what the future will hold for my girls and for all the other April babies?

I also want to tell these moms, my online friends, that things will get easier, that some things will remain harder, that at least they'll have resources, not to lose hope. But again, I remind myself- this will be a journey for their baby, for their family. No amount of words or warning will ever be able to adequately define the emotional journey that the diagnosis brings. For some, the diagnosis will be a confirmation and perhaps even a relief to know what is causing the different behaviors in their baby. For others, like us, the diagnosis will come with no warning and will absolutely floor them. For others, this journey will be a repetition- because some of us already have a child on the spectrum. Will it be easier? In some ways, since we know where to go to get the diagnosis and how to get the services started. But in other ways, no- not easier just a reality.

In the meantime, I'll keep reading posts and try not to assume everything is caused by Autism, I'll stop layman diagnosing, I'll stop being the Autism reaper. Instead, I'll go back to being a mom of 3. Wow, 3- it happened overnight it seems. I'm really hoping my girls hit their milestones on time and that Apple catches up developmentally. But you know what, regardless of what 18 months old looks like for us-- I know my girls are happy and that makes everything perfect doesn't it?

FML Crap like this

I've always hated that expression and dare I say overly used acronym on Facebook. Really, what could be so terrible in your life that would make you feel like cashing it in or making you feel so useless? Well today dear FML frequent users, I'm joining the club! Because some days, well nights if you're a SAHM, only an expletive as lovely as the f-bomb can ever satisfy emotionally! And then, only after multiple uses!!

Tonight I feel so frustrated and useless that I either want to scream it at the top of my lungs repeatedly, stomp my foot, or maybe go sip a twisted lemonade (I do have nearly an entire case in stock). Except I'm a mom and I remind myself that I need to be more responsible and I'm on an antibiotic. Let me tell you about the last 2 weeks since we got back from our Cali trip.

We came back restored & refreshed to a house full of sick kids who then spread their germs as only kids can do and got my house sick and my parents house sick too. I got back into the grind last week with 2 sick girls with ear infections and upper respiratory infections, dragged them to therapies with JD, I finally realized I was sick, hubby even stayed home to help on one of those days, before you know it I had a raging fever and I found myself bundling up like we were living in the Arctic instead of living in the dead of summer in the middle of a Philly heatwave.

Last week was rough and well I didn't get around to going to the doctor until Saturday. At 34 years old,  I somehow get my 1st case of a double ear infection while getting a visit from Aunt Flo. To make myself even luckier I had an allergic reaction to amoxicilin. I spent a miserable unfortunate night trapped between the bathroom and the kids rooms wondering if the so called cure was going to kill me as I flushed yet another time as I purged from multiple orifices simultaneously. It's a latent talent. On Monday, my nurse told me that I should've gone to the hospital after the first flush. Hmm, I'd have to be dying. No thanks. I dealt with the swollen gums and the painful GI issues. She doesn't know my hatred for hospitals or my high pain threshold-- if you have Achalasia or any one of the "rare" diseases you hate hospitals. I'd explain why but well you have to be part of the club to get it.

Sometime in the wee hours of Sunday I wanted to die but realized I couldn't because my will isn't done and hubby doesn't know what meds or supplements the kids are on, the calendar isn't updated, and I have no life insurance since Met Life denied me the bastards! If I go to the hospital, I'll have to drive myself because the kids are sleeping, and no way am I pooping in my pants in my van, it'll stink for months and I'll be beyond embarrassed. I'll just stay in my bathroom floor. Today I'm eyeing the penicillin (new prescription) kinda nervously because my stomach is sore but at least I'm feeling somewhat recovered from the crap throw up fest. And my mouth is back to normal.

Took the girls to the pediatrician for their 16 mo check up and my babies are significantly underweight. I must go get them tested for Celiacs and other disorders and take Apple for a visit to the developmental pediatrician. I have a month to fatten them up before something dire apparently although what the dire is no one mentions? So this implies what? That I don't feed them? That I somehow miss a crying hungry baby? I'd notice, I think, if someone was crying for food. I know they're skinny but I swear I feed them! I have a fairly strict routine with the kids. One of them has autism and I have multis, routines come with motherhood of special needs. Its like peanut butter and jelly or salt and pepper or well you get what I'm saying here.

Then while the girls are crying since they're hungry and its nap time, I decline their shots just like I have at their 9 mo and every time I've gone in since. I just smile, shake my head negative, and tell her we're opting out. She either assumes I'm taking it lightly or thinks she can change my mind. Why she feels that lecturing me on the importance of vaccinations will change my mind? I dunno. I wanted to argue about efficacy rates, the percentages of people with severe allergic reactions to both these vaccines (Dtap and MMR), and the fact that I wasn't anti vaccine, merely didn't believe in unnecessary ingredients or combination shots. But instead I just signed the release for non vaccination and proceeded to nurse the girls to quiet them down. Because you see Dear Dr. Pam (and I do honestly like this doctor, she's very patient, thorough, and respectful), I do not need another vaccinate your kids lecture. I am a 34 year old mom of 3, 2 with special needs. I have logged how many hours in therapies, driving them to specialists, to therapies, calling to arrange things, I have an MBA, a BBA, and even a library card. I am fully capable to make an informed decision and while you're spouting off the latest CDC memo, I'm noticing that you have NOT informed me of all the dangers. So politely shut up so I can feed the girls, have you not noticed (and how could you fail to hear) that the girls have not stopped screaming through this entire visit because my appointment was at 10 and it's now 11:30 and we've been in this room for over an hour? So I start unclasping my bra and lifting my shirt and that was her cue to run out the room. I need to feed my kids I don't feed enough right?

I'm a bit depressed because I knew we'd have to take Apple to the Dev. Peds. I knew that was coming. But somehow it seems worse now that it's an official request from our pediatrician- I don't know why. I reach out for comfort and reassurance and find myself in my room listening to Delilah wanting to post FML on Facebook because I'm tired of dealing with Crap Like This! Being sick with stupid things that adults typically don't get- like an ear infection, let alone 2. A sudden allergic reaction to Amoxicilin. My kids not gaining weight. Oooh and being lectured on the dangers of not vaccinating against Whooping Cough and Measles. And to make my self pity party complete, I missed taking JD to a birthday party and I enjoy those. I also got into an argument with hubby in front of the in laws. We've always always agreed never to argue in front of our folks. Arguments are private right? Except when I get yelled at for coming down to deal with the crying, squealing 3 kids who are having stranger danger and over stimulation issues. Yelled at! Oh I'm sorry, you just got excited, you didn't yell. Maybe I should have stayed upstairs though since I wasn't feeling great and I didn't count to 550. I had zero patience and just blasted him. Not my finest moment. I'm not embarrassed. Just pissed at myself for letting it get to that point.

Note to self, FML I'm tired of dealing with this shit! I have enough on my plate with the kids, I do not have time for marital squabbles over me daring to come downstairs or as tonight, I do not have time for non-squabbles over how someone fails to understand that all I needed was a shoulder to cry on. A silent shoulder who didn't say the wrong thing and not enough of the appropriate thing. When did it become ok for someone else to feel the need to validate my emotions? I don't recall asking for permission for my emotions. I'm going to end this here because I'm tired, cranky, and down in the dumps (no pun intended. Oh okay, that was gross. But hey it was my allergic reaction, I can make fun of it).

I'll leave you with a good song on the radio right now that I love. And it's somewhat appropriate.
Marriage isn't about perfection or always agreeing, it's about knowing each others imperfections and making it work, because we've got 3 kids and they deserve happy parents able to provide them a happy childhood.

Goodnight!

Kids are expensive!

I'm reworking our family budget, trying to trim costs and make our budget balance. It is very difficult to go down to one income and adjust accordingly with 3 little kids. They are expensive and get even more expensive the older they get!

Now in the past year since we've been a 1 income household I've become pretty saving savy.
One of the best things I did was before I quit- I bought my van in cash by emptying my 401K. I know some view that as a faux pas but I can't imagine relying on others or public transportation. If I had a car payment we would be in deep trouble right now. So I am glad that I did it, even though it left me with no retirement fund. I just figure I'll be working for the rest of my life in one way or another.

I've also started couponing-- not an extreme couponer, just a smart couponer. If a deal is good enough, then I bulk up my supply. I buy when things are on sale and if I have a coupon. I buy store brand, I buy the kids clothes either on clearance or from a consignment. Diapers, bath toiletries, wipes- I buy in bulk or via subscribe n save on Amazon.com or Diapers.com. 

I've done an interest rate reduction twice on our mortgage. It's not much, but every penny saved is a penny earned right? I've cashed in our change and deposited into the kids accounts, I've consolidated our credit card debt into a 0% offer and I'll keep doing that until hopefully the debt is gone. I'll have myself a hallelujah happy dance when that day comes. I called the phone company and cable companies threatening to cancel. I've gotten promotional deals this way. Most recently I changed from cable to satellite and I bundled it with my phone, cell, and internet. I am saving over $150. just on that alone! So a month ago we started with a monthly budget deficit over $450, now I'm just trying to find an extra $150 a month. That's huge! I've been busy making phone calls and researching costs. I still have more things to cut out, more things to see about changing, my goal is to make this budget be in the black. Then I need to figure out how to make extra money in the fall. I'd like to start saving again and have a decent down payment for when we eventually move.

Anyways, kids are expensive, budgets are a necessary evil, and I have a headache from working on excel today. Here's a copy of the baby/kid expenses portion.

	Price per Unit	Units per Mo	Monthly Costs
sz 4 Luvs 180 ct	35	1	35
sz 7 Pampers 100 ct	47.19	1	47.19
shampoo/bath	30	1	30
wipes box of 720	18.49	1	18.49
mum mums	15.31	1	15.31
puffs	17.63	1	17.63
yogurt/melts	80	1	80
fruit snacks	14.08	1.5	21.12
juice	2.5	8	20
coconut milk/rice milk	4	6	24
gas	55	4	220
vitamins	19.99	0.33	6.5967
calcium chews	4.9	0.5	2.45
Girls Omega	13.56	1	13.56
omega	28	0.33	9.24
probiotics	16.75	3	50.25
enzymes	23.62	0.5	11.81
		Total	535.34