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?