Autism Speaks.

Baby Boy’s recent hospitalization had given me a break from worrying about our impending visit with the developmental pediatrician. But my days of blessed denial that things were just not right were short lived – though I have felt really at peace in the last two days about the possible diagnosis. I had refused to do any research on autism, choosing not to worry over things I could not change. About an hour and a half into the doctor's appointment, I had to remove my head from the sand – nothing like getting a Modified Checklist for Autism in Toddlers to force you to face reality! Baby Boy has regressed in some areas since our last testing in December, but he shows slight improvement in others. We now have a provisional diagnosis of autism and the doctor will also be doing some testing to rule out some genetic disorders. I had not let my mind go to what this might mean, but I finally broke down at the doctor’s office. The kind of doctor she is did not help my resolve to be strong -she is the most amazing doctor I have ever met – she is so caring, compassionate, kind and the best advocate any child could ever ask for. She even apologized because she was fifteen minutes late – which was not a big deal since we were seeing the nurse during the wait. She showed real empathy for what this means, and she was really struggling and hoping that the tests she was doing as well as the questionnaire were not pointing at what she was suspecting. This is the greatest practice I have ever seen, she was not fazed even one bit when she walked in and two tired and wired toddlers had gone to town with all the toys in her office, her nurse also kept Baby Girl company for two hours, playing with her and taking her for a walk and they both offered to help me get the kids to the car. The doctor also gave me her cell phone number to call with any questions, concerns or for help to get my son additional services. She did not try to paint an unreasonably rosy picture – she assured me it could be a very tough road (the spectrum is so wide and we don't know where Baby Boy falls) and doctors are still a very long way from understanding autism, let alone getting a cure.

Everything now makes sense – Baby Boy’s speech therapist, early intervention specialist, case manager as well as occupational therapist had all been asking if I had considered center-based care so that Baby Boy’s needs could be provided under one roof. I was a bit confused since he is getting all his services under one roof – the therapists do weekly home visits – but I think they all suspected autism, but no-one wanted to say the word! This is the new territory we will be exploring – the developmental pediatrician also made recommendations for some centers and advised that he needs daily one-on-one intensive therapies. I am heart-broken. This means separating the twins and for 20-25 hours a week, removing him from the one secure place he has known. I am also terrified that I will mess this mommy thing – my formerly very cuddly and compliant son is now really testing the boundaries, becoming extremely independent and more frustrated at our inability to understand him. I grew up in a family where children’s obedience was expected and nothing raises my blood pressure more than seeing disobedient and disrespectful children. I have been working hard to establish this same expectation for my kids. How do I strike the balance between not letting my great empathy for my son make me swing to the other extreme and become too permissive with him (and possibly turn him into a little monster) or have unreasonable expectations that he cannot meet because of what is going on neurologically? Today, I am broken and I will let my heart grieve. Tomorrow, I will raise my chin, put on my big girl pants and continue advocating for baby boy. Dear, darling boy, you have been dealt a lot, but mommy and daddy will go to the ends of the earth to try and help you overcome your obstacles. And even more importantly, your Heavenly Father can take the ashes of what seems to be a bleak picture and bring Glory to Himself. I cannot wait to see how He will use you. I love you so much Baby Boy, my heart could explode.

Arrested!

That's the crazy thought that went through our minds when we saw Baby Boy's bed in his room at Children's Hospital! I have never been to a children's ward, so I had never seen the cages beds that kids sleep in. I guess we needed some comic relief after our ER scare. I am a slow learner, I still did not figure out the seriousness of my son's illness even after the triage nurse immediately showed us into a room upon arrival, seeing a team of three respiratory technicians, five nurses and three doctors all working on my son and all asking me rapid fire questions. Baby Boy has had more than his fair share of ER visits at our regular hospital (nothing like being on first name basis with the ER staff), but I thought that since this was a Children's hospital, this was protocol having so many people working on your child!

Baby Boy earned himself a four day stay at Children's Hospital and my heart goes out to parents whose children have extended hospitalizations. It is exhausting trying to keep a child from tearing off their IVs, keeping them in their beds when all they want to do is to make a run for it, and entertaining a child who is stuck in bed and who is anxious because he misses his siblings, but they can't visit him because he is under precautionary isolation. But, all things considered, Baby Boy was such a trooper and we did finally see a doctor who is more aggressive in treating asthma. We had seen a pulmonologist a couple of weeks before Baby Boy's hospitalization because I felt we did not have a good treatment plan for Baby Boy's asthma, but the pulmonologist pretty much kept the same treatment plan as Baby Boy's regular pediatrician. Now we have a better treatment plan and a lot less guilt for mommy because I felt like I missing something since I was following all the doctor's orders but Baby Boy was still making too many emergency room visits. 2 of my other kids have garden variety asthma while Baby Boy is a labile asthmatic - fine one minute and within hours his heart rate is racing, low oxygen saturation and really high respirations and needs more help than just his nebulizer.

Baby Boy is now back to his old happy self and he was one happy camper to be back home. We see his developmental pediatrician this week. Little guy needs a break - he is a friendly guy alright, but our heads spin with the medical professionals in his team - pediatrician, speech therapist, occupational therapist, developmental pediatrician, early interventionist and now a pulmonologist. But we are really grateful for access to excellent medical care and understanding work places.

Because I Hate Black People.......

Event: end of kindergarten school year picnic in the park.

One little kindergarten boy asks a little kindergarten girl to please be his partner for a water balloon fight. Little kindergarten girl folds her hands and tells little kindergarten boy she does not want to be his partner. Little innocent kindergarten boy skips off happily to look for some one else who wants to play. When all are paired up, little kindergarten girl does not have a partner. Little kindergarten girl with quivering lips comes to a mommy who was observing the interaction to ask for her assistance in getting a partner. The observing mommy reminds little kindergarten girl that little kindergarten boy had asked to be her partner and she declined. Little kindergarten girl without missing a beat says she did not want to play with him because she hates black people. Observing mommy almost has a heart attack - a full fledged racist kindergartener? Unfortunately (or fortunately because this mommy is not sure of the outcome of the "little talk" she would have had) little kindergarten girl’s mommy is not at the picnic.

So many things that are tragic with this picture – little kindergarten boy who has a really tender heart who through out the school year would finish his work really fast to help little kindergarten girl with her work - some of the other little girls would make fun of little kindergarten girl since she was struggling with kindergarten schoolwork and little kindergarten boy did not want anyone making fun of her. Little kindergarten boy who really wanted to learn how to tie his shoes and though shy, would ask any adult in the class to teach him how. All so that he could teach little kindergarten girl how to tie hers so that same said girls Would stop laughing at her since she did not know how to tie hers. Tragic that little kindergarten girl’s heart has already been corrupted with such hate at such a young age. Even more tragic that little girl peddling racism is Vietnamese and will have to deal with prejudice and racism directed at her. Tragic for innocent little kindergarten boy who will have to overcome enormous challenges to be the boy who God intended him to be – brilliant scientist, kind-hearted, caring and all around one totally decent kid. Oh how my heart breaks for him - it is one thing to deal with prejudice and racism from adults, but having to deal with it from your peers as early as kindergarten? Tragic for the mommy observing this interaction who was too flabbergasted to figure out how to handle the issue – I mean a chat with the parents is probably meaningless – racism is not genetic but taught. And this mommy has to quickly get her act together to get a game plan because her black children are counting on her to protect them against racism, both veiled and not so veiled. And all this happening in an elementary school in a state that calls itself the trail blazer in progressive issues and where diversity is supposedly the fad de jour. Oh what hope is there for our children if fifty years after dogs and fire hoses were unleashed on school children fighting against racism, racism is still so much alive and well?

When Love Is Not Enough

Before adopting Baby Boy, we knew he had some developmental delays. But his social worker assured us the delays were nothing that a loving home would not “cure” in a few short months. Well, I am here to say, that a year later, love alone has not “cured” my traumatized child. I totally was uninformed on the issues that a traumatized child can face (not that it would have made any difference whatsoever in our decision), but I am sad that the professionals who should be better informed seemed more clueless than I was. More than a year later, we have loved Baby Boy to pieces, advocated for his needs and made sure he gets early intervention services, speech therapy, sees a developmental pediatrician and we are now adding occupational therapy. Even with all these interventions, the progress is slower than slow. At 28 months, Baby Boy still does not speak volitionally, nor can he use his sign language volitionally – he will repeat words in context and use a sign after you say the word, but he can’t initiate the word or sign enough to communicate. His vocabulary is less than 10 words – less than his one year old sister’s vocabulary. This sometimes leaves a frustrated child – he knows what he wants, but simply can’t communicate his needs because mommy sometimes does not understand the grunts or pointing or babbling. And this leaves a grieving mommy when she looks at a happy, smiling boy who is clueless at the mountains he will have to overcome. I thought I had some parenting issues down pat, like how to potty train in four days. But we got thrown for a loop – how do you potty train a child who will not communicate volitionally that he needs to go? If you ask him if he needs to use the potty, he just smiles and says potty. Baby boy does not understand most two step commands and we are left wondering how to parent twins who are reaching their developmental milestones miles apart? And how do you show empathy for the one, without neglecting the needs of the other? When we were getting an evaluation for occupational therapy, I wanted to bury my head and pretend that the questions that the therapist was asking were not pointing to autism. Of course, she soon removed the wool from my eyes by using the A word! Baby Boy does not have an official diagnosis of autism, and I am stopping myself from doing any research – because I want a few carefree days of blessed ignorance before his next appointment with the developmental pediatrician in a couple of weeks. So we soldier on, trying to prove his social worker right that all he needs is love and he will catch up to his peers.