the first years are the formative years

I often hear about "early intervention" for special needs kids, and how the early years are formative. As a teacher, I know the importance of early intervention and would kind of silently judge parents who ignored such advice, that is, until I joined their ranks in a way.

I have a son with many small issues, "holes" in his growth and development, as his speech teacher says. And since every mom is her own worst critic, I blame myself for it all. Man...I gave him his vaccinations without questioning? He drank some formula! He eats foods with Red #40! I coddled him too much! TV is rotting his brain! Crap, I forgot to read him a book for an entire week! I yelled at him when he pinched me!

But then, other times, I know who to blame. Times like today make the blame very evident. The System. The System is to blame.

At age one and a half, I knew something was up. The numerous infections, near non existant appetite, head banging, lack of words or signs, the clingyness... so I asked around and everyone said, call the regional center, they are the only ones who can help. So I did. I spent my entire prep period calling different numbers at the center, trying to get a human, leaving voice mails and emails, pleading for direction. One number even said something like, we are over burdened so expect us to get back to you in a few months. In. A. Few. Months. I was pissed. I waited and waited, 5 months, until I got an email, saying they were returning my email so hey call this number (the same few month wait number). I hesitated, for obvious reason.

Meanwhile, my mother found out about a program at the school down the street. I went the very next day, and the next and the next, until I found someone who could help. My son attended a speech class there, and then was told he was too young, and would need to go to the regional center. I refused to take that for an answer, so I did my research and found out he did qualify at the school. So I waited two months for an IEP. Or whatever they call it at his age.

By then, he qualified for the school service and attended two classes until heeeeey it is almost summer and so um..class is cancelled till late September. Again, I was quite mad. I found out they offer in home services and demanded them.

The services didnt target anything specific. It was just a very nice lady who did developmental games like puzzles. I dont think it helped him one bit, but I didnt want to lose whatever services I could get. Summer vacation breaks meant my son was maybe seen 6 times. But luckily the services continued into the school year (occasionally) since he did not qualify for classes or targeted assistance because the school kept changing things.

I looked into private therapy, but it was an hour away and took 3 months to get the consultation authorized. I had a special needs toddler and a newborn, so I was not thrilled about an hour drive. I, meanwhile, looked into seeing a new ENT (maybe one who did more than flash a light in my son's ear and suggest a third operation after two that did no good), and a chiropractor to fill the "what the hell, cant hurt him" quota.

I found, after a few weeks, I had to go out of network for the ENT, and gladly searched for THE most perfect ENT and found him. I called my son's doctor, processed some forms, same with insurance, and the doctor, called back insurance and.....oh...we don't accept that ENT. Here is a list of who to try. So I pick choice number two and....yep you guessed ot, same rigamarole, same result. After they said both doctors qualified. Then insurance tells me they won't authorize any ENT except his current one, at which point mama bear came out. Growl. I got a supervisor who agreed to help and....guess what? She said oh I dont see a single ENT. In your entire state. (Of over 30 million people.
) I flip the f*ck out and magically she finds one doctor. I call and make the soonest appointment...5 months ahead.

Then that ENT says they cant take my insurance, except they tell me this the day of the appointment. I beg and plead and they say they will try and work it out.

Meanwhile, my son sees a chiropractor who does thirty seconds of massage twice a month and I think, this is hogwash, but I will do it anyways. Anything for my son. A few weeks in, I get a call that my insurance is denying services. I start to cry and.....a miracle happens. The receptionist whispers, ok....the chiropractor wants to help your son. Pay us in cash, your co pay you once had, shh..... so...I do. And by God, it seems his infections disappeared. Total miracle, and enough good news to keep me going, pursuing his other issues.

So I go to see the ENT right after his infections had cleared (murphy's law) and another little miracle. Or really, what should be standard practices. He checks my sons ears. And then, his nose! And throat!  And performs a basic speech and hearing test. He asks about teething, milestones, sleep patterns. Wow! An ENT that, well, does E, N, and T stuff! He notices my son has enlarged but not infected tonsils. I thank the doctor for such thorough work and sadlly bid adieu, since I am unable to afford his help again. I report to my son's regular ENT about the tonsils and am told, oh, we never did look in his throat because you had reported ear problems. I spurt out, ENT means more than just E! And she says, make an appt with the pediatrician to get a referral to me to have me look at the tonsils and notate this in his record. I hang up. And give up.

Meanwhile,we see an audiologist. Four times. The first says he has a 30db hearing loss and sends us for more testing. The second time, my son wont sit still or wear headphones so we dont get a result. Ditto for the third attempt. The fourth ends in....confusion, as he didnt respond to certain hertz or waves or something and showed some issues but yet its not of concern and his hearing is fine....you know...cause fine means not hearing stuff.

I get him an IEP for when he turns 3, in home services end at this point. Then his paperwork is lost so he doesnt get speech class for three months. Then, with two months of school left with school holidays, furlough, speech teacher days off....he goes to class twice. And then it is summer break.

I get a referral to a nutritionist and it was kind of insulting. My son eats only a handful of foods and barely eats those (four bites of sausage for an entire meal, and two spoons of cereal for snack, is worthy of bragging to relatives about). She shows me a food pyramid and some Obama healthy eating website and that is all. Like I am a total incompetent human being who hasnt a clue about food.

The school year has begun and we have had one speech class, luckily it actually seems kind of targeted!  I asked about screening for ASD and SPD which the district legally must offer through an OT. Except our district has denied legal services to 50 students; most in the preschool program. I call my favorite regional center and actually get a human who says, if he is over three, we only serve those with ASD or other severe, diagnoses disability (ie Downs Syndrome). Since I cant even get a diagnosis, he cant get services there.

So I call his doctor but our network doesnt have any  OTs or really any pediatric specialist of any sort. So I research and find a place two hours away and call them. I leave a voice mail, they return my call 2 weeks later but I miss it. I return their call (yay voice mail), twice, and it has been a week. I am still waiting.

 Meanwhile, I find out there are OTs closer to home but I get to do the same referral process I did with the ENT plus an initial rec letter from his speech therapist. Two weeks later, she pens the letter. Four days later, the pediatrician still has yet to recieve the fax because the number which two of their receptionists provided me to fax to, apparently doesnt exist. And our home fax machine is broken and no where in town has a fax. I have to haul my two kids down in 110 degree weather to hand deliver the letter, an hour away, or wait two weeks for the therapist to re-fax it because she is on vacation. Then, the pediatrician must authorize an out of network referral and they get to choose the OT. This can take months. They may not even authorize it. If they do, it may only be a consultation, not even an evaluation. The OT might have stupid hours and rules, like the therapist I tried to get who only worked M-Th, 8-1, no kids allowed. (My town lacks any infant care, and my husband cant take off work to watch the kiddos until 3pm or a Friday).

Yesterday, I thought about writing this but was depressed because my son is almost four and his speech is "maybe at 24 months" and he needs "major intervention". No sh*t. At least someone has recognized this, but I feel he would be more advanced or skilled had someone other thsn myself given a crap two years ago. It saddened me to hear his speech therapist breathe a sigh of relief that we wont start kindergarten for two years, because he is that "behind". It made me question what growth I have seen in him. It made me doubt myself.

So the whole early intervention spiel? It is crap.2 If you see a frazzled mom with a special needs kid and you think, man that kid needs therapy, special ed, etc, perhaps this mom is like me. Perhaps she wanted to help her child, asap, to the best of her ability. And perhaps she has been trying to get the help her child deserves, for two years and counting. So smile, offer to help in any way, praise her for her efforts, offer a shoulder to cry on (or lots of wine!) When the red tape and hoops become unbearable.