Thursday, November 4, 2010

Special Needs Children

Special Needs - what does this mean to you? What do you envision when you hear this term?

There was a time when the term Special Needs only brought to mind people with severe physical and mental disabilities. There are so many levels of special needs.

Do you know that my children have "special needs"?

One son has been diagnosed....many times over, four in fact, with severe ADHD. In our case, it is NOT over diagnosed. It took over a year for us to even consider there was a need for a diagnosis. Once we got our heads and hearts around that, then what? Months and months later, through many phone calls, many appointments, talking until my heart was empty and my head full, we were able to get through the diagnosis hoops and start the process for getting help.

My husband and I work damn hard at taking care of our son. We meet with professionals regularly. We are always working on positive parenting specifically for children with special needs. It is kinda different that parenting a "regular child". We are good parents. We are NOT perfect parents but we are GOOD parents. We have our moments. Our weaknesses.

So does our son. You see, the challenge in all this is that our sweet son is human. With a mind of his own. A drive of his own. Couple that with the challenges of ADHD and wowza! It's not always smooth sailing.

Having said that, I am proud of our son. I am fiercely protective. I take comfort in knowing that my favorite husband, B and I do more than you can imagine for our child.

Then there is child number 2. Our Bup. He is a special needs child as well. Tuberous Sclerosis Complex. The maybe disease. Maybe he will be just fine. Maybe he will be developmentally delayed. Maybe he will have ADHD or Autism or more. Maybe he will live a completely "normal" life and only have seizures and benign tumors that aren't causing problems. Yes, he will take meds for his whole life. No he will not "outgrow" this. Yes, the meds affect him, his personality, his behavior. So does the trauma of having procedures done repeatedly. He's just a little guy. It would affect anyone; adult or child. Yes, we have our work cut out for us here too. We have to work with new complications, behaviors, seizures that creep up and rear their ugly heads, etc.

The most difficult challenge of having children with extra needs? Is it the complete and utter exhaustion? Some days.

Is it the confrontations and challenges with the boys? Some days.

More though....what hurts and angers the most?
People's attitudes.
People who feel our children just misbehave.
People who feel we as parents are out of wack and make too much of the situation. That our kids should be able to eat anything and aren't allergic to many foods.
Those who feel ADHD is over diagnosed and maybe not real.
Those who feel we should just discipline our children better. Maybe a good spanking would stop the outbursts, the inability to sit still at the dinner table, the hyperactivity, etc.
People's choice to not educate themselves.
People's eye rolling and body language of annoyance. We are not blind. We see this. It hurts and angers us. Our children feel this. We are not immune.
People's chosen ignorance.
People's uneducated opinion that they know better than we the parents of our special, loved, wonderful children.
That is what's the worst and hardest about having children with special needs. Not the child. Not the illness.

Now, when I think of a child with special needs. I think of a child with special gifts. Special intelligence. Special humor. Special challenges.

I think of the parents persevering to do the best for their child.

And I will smirk, and discount those people who chose not to see the truth. I will continue to educate and advocate and hopefully, those who are not knowledgeable will open their hearts, their minds and maybe, close their mouths.


  1. Just want to say once again, you are amazing and awesome. We as mothers are the most judgemental bunch of so and so's there are, so keep your chin up, look em in the eye and stick out your tongue. :) Love all your posts!

  2. WOW! Well said. I too think you are amazing and awesome!
    Your boys are wonderful and you do a wonderful job with them, even through the challenges and exhaustion.
    Hats off to you and favorite hubby for the hard work and time you spend making life great for those little cuties.

    Hugs to you all (well maybe not B because he might make me sick!)


  3. Thank you for your story. We are all doing the best we can for our special children. Please read my daughter's story here:

  4. I've been wondering lately when people will stop comparing Trevy to their "typical" child. I thought it would be when they saw him brave a cluster of seizures. It wasn't. I thought surely when he was approved for the special ed program at the tender age of three. It wasn't. I will admit to making sure his med time happened to fall during a public event...because I thought perhaps seeing us force feed him enough toxins to knock a horse on her boot would help them "get" it. Nope. I thought there is NO way they will say "my little johnny does that too" when he has a scar running from forehead to neckline. Evidence that half his brain has been removed. A very A-typical and drastic measure. Nope...not then either.

    Very frustrating. Sad. Annoying.

    I'm SO proud of you for voicing it SO eloquently. I've been cussing people out in my head for months now instead. :)

    Oh...and btw...I've been raising two typical children for nine plus years now, ya know. Evidently no extra credit is given for that either.

    Thanks, hon. Love this post!


  5. I can't seem to find the right words for what I'm thinking...but we'll have lots to talk about on our walk next week :o)

    Hang in there - you guys (kids and parents) are fantastic and we love you just the way you are.

  6. Mrs. M, I know you are a fantastic mom! You and B are wonderful loving parents. It's not easy and you work hard. Even when it takes everything you've got.
    Keep talking and educating and be proud of the job you're doing. I think you're amazing!

  7. Well said! (insert applause!) I can only imagine what has prompted this post, but I hope that it is read by all who need to hear it! You go girl! I have known since I was 8 years old what a kind and considerate person you are and for anyone in your life to not extend that same coutesy to you and or any member of your family is ludicris! your children are "special", but not for what they have been labelled, but just for who they are....2 beautiful boys!