Sick of it.

I'm getting sick of having to justify my son's diagnosis to people.

In fact, it's making me freaking crazy.

So you all know that my youngest of four kids was diagnosed with PDD (under the Autismn Spectrum) and SPD. And to sum it all up...he isn't as bad as he could be, but he isn't as good as it should be. He isn't drooling on himself and banging his head on a wall, but he isn't where he should be develomentally. (His psychologist who diagnosed him thinks he is at 1 1/2 yr old level, and he is 2 1/2 yrs old.) When it is just he and I, I feel like he is normal. When I am around other 2.5 year olds...the difference is blatant.

Ok, now that we've got that out of the way...

I keep having the same mother freaking conversations with people, and it is really torquing me off. Like...really. "It's hard to hear you calling him special needs." or "You always say that you have a special needs child, and it seems excessive." or "I just don't understand why you're calling him special needs all the time, he seems fine to me."

Really? Because it's a walk in the park to call him that. It sure does make a mom feel good to use that term in reference to her kid. It's a real warm fuzzy for me. (In case you hadn't guessed, that's called sarcasm.)

So here is the deal: I have to stop what I am doing 6-12 times a day to "brush" my son. And yes, he is primarily hairless. He is not an ape. Then I get to do joint compressions. Oh, and I also paid $90 for a weighted blanket for him so that he will sto trying to cram himself into strange tight spots, and so that he will sleep through the night for the FIRST TIME SINCE BIRTH. And we will be testing him in compression vests soon to keep him from scratching himself bloody. And his OT and I have been dilligently working on getting him into a lycra swing at therapy, because kids with SPD really respond well to those swings, and Sam spends 75% of his time unhappy and crying, and we're trying to help him to feel secure. Oh, and we;ve had to make special "PECS", or picture cards, so that Sam can actually communicate with us instead of screaming at the top of his lungs. Oh, and we're also taking him to a therapist to teach him how to EAT things other than Cheeze Its and Go-gurt. Did you hear that? A therapist needs to TEACH him how to eat. To eat. A basic life skill, and he needs to be taugh how to do it without losing his mind.

Okay, am I putting this into perspective for everyone?

Sure....the term "Special Needs" is ticking people off, but where in that previous paragraph does he seem particularly "normal"? Where in that paragraph does the term "Special Needs" seem unecessary and excessive? And where along the way did anyone who 1.) isn't a trained therapist or psychologist with training in the field of ASD and SPD, and 2.) doesn't spend much more than 15-30 minutes with my youngest child at a time.....become a freaking expert on his development?

Can someone please explain why this conversation keeps happening to me? Can someone please explain to me why people I love keep questioning the validity of our son's diagnosis? Do people think I am enjoying this sh*t? Do people think it is somehow gratifying to spend 75% of my day doing therapies I've learned at my son's appointments, fighting with a child who is uncomfortable and miserable, and avoiding doing certain things because the battle ahead just for the sake of going to the store and buying a carton of milk doesn't seem worth it??

Can someone please explain to me why a child who was seen by the best ASD doctor in the Inland Northwest and diagnosed as being on the spectrum and having SPD, and yet...people around me with little to no education and no experience beyong "occasionally" seeing a kid on the spectrum here or there, has the ability to tell me that my usage of the words "Special Needs" is excessive?

These are usually the same people who would rather let their child grow up hindered by learning disabilities rather than letting them be treated and taught effectively. These are usually the types of parents who shudder and frown at "labels" declaring that they're bad, and that they don't help children in the slightest. They are the type of parents who would rather let their children suffer, fall behind in school, become socially ostercized, and drive other people, kids, and teachers crazy because they are so hell bent on NOT seeking out the dreaded "LABEL" and eventual treatment their kids might need. All for the sake of what?

*Gasp* Not having the words "ADD, ASD, PDD, SPD" or whatever else, on their kid's permanent record.

Talk about selfish. Talk about neglectful parenting. Talk about putting your children first???

How about putting them last? With my son's "LABELS", his teachers will always be watching him for signs of regression. They will be watching him for signs of social struggles. They will be offering him extra help that he may need, even though ALL kids should get that help, when the truth is...they don't. They will be watching my son to make sure he isn't getting worse. They will be working along my side to make sure that if he is on track, he stays on track. And, no matter how much of a perfect parent someone thinks they are, they will eventually need the teachers help. Eventually, that teacher will see that child as much as they do, and they'll need that teacher's input, even if they don't want to admit it.

If we hadn't gotten our son diagnosed, who knows where he would have been in another year? He could have been completely normal, which would have been fantastic, or he could have been worse. He's already only saying 1/3 of the words he should be able to say. He's already scratching himself raw and not sleeping fo rmore than 2 hrs at a time. He's already suffering from poor nutrition because he refuses to eat anything but Cheeze Its and Go-gurt. He's already socially inept. And when we see him along side other 2.5 yr olds, he's already blatantly, glaringly behind. What else had to happen to justify his diagnosis? What else does he have to go through, in order to prove to the uneducated doubters who hate the "labels" that this isn't a mother freaking joy ride for our family?

I haven't gotten through a day without crying at least once since August. I haven't had a full night's sleep in 29 months. I haven't eaten a meal with my son without having to apply at least two to three therapies I've learned at ST in a month. I haven't had ONE day since last June where my son hasn't inexplicably cried so loud and so hard that the neighbors could hear it. I haven't been able to cuddle and hold my baby without being bit, scratched, hit, screamed at, kicked, or pushed away in heaven knows how long. Does this sound like something I would be doing for fun? For the "fun" usage of the "label" of Special Needs?

People see him for a few minutes here and there. We live with him. Some days are good. Others are bad. And when they are bad, they are very bad. We've had three proffessionals with training in the field of the Autism Spectrum tell us what is wrong with our youngest, and what we need to do in order to get him back on track by the time he starts kindergarten............and now we're having to justify that diagnosis to the peanut gallery??
Talk about excessive and frustrating. It's enough to make us crazy.

Our youngest is a great kid. He is the absolute perfect little man for our family. I don't know what I did to deserve the chance to be his mother. He is my heart.

Don't question the proffessionals. Don't mock "labels" unless you've looked at the situation from both sides. It's easy for me to say what the proper method of treatment for cancer is, but in all actuality, I haven't got a clue. I'm not a doctor, and I've never had cancer. Period. And so help me....if we use the term "Special Needs", and you don't like it.....................

Plug your damn ears, and keep your thoughts to yourself.

Brooke Moss.