Sunday, February 23, 2014

All Kids Are Special: Some Just Have Different Needs

It was around the time he was six months of age I began having a nagging feeling something wasn't right about his development. There seemed to be a lack of eye contact, a lack of connection between us... and the baby talk, the cooing, the babble that should have been was absent. Finally "da da" came but it went just as quickly after being uttered only a few times. 

Soon nine months approached and my mother watched with alarm as he inched his body away from his soft baby toys in the playpen as if he was terrified of them... he wouldn't interact with them and instead was seemingly transfixed by the ceiling fan overhead. Sleeping wouldn't happen... self soothing was non-existent... walking him, rocking him, nothing seemed to work. The pacifier was projected across the room immediately. Unhappiness seemed rampant and crying was too. 

Crawling was late... months late and when it finally happened it was an army crawl... forging forward with his forearms but dragging his legs across the cream Berber carpet. Walking was even later and finally one day around the age of two when he toddled to the fridge and pointed at it, grunting for milk, I knew then something was very, very wrong. 

Making an appointment with my son's pediatrician I spoke to him about the mutiple issues including the lack of speech. He chalked up every one of my concerns to being an "anxious first time mother." I fired him. I knew something wasn't right... my gut instinct screamed something was very wrong and that my son's development was seriously lagging. 

Finding a new pediatrician I once again voiced my concerns and immediately she confirmed there was reason to be alarmed. She referred me to a local early child development agency that offers intervention, therapy and in home visits by trained therapists and nurses. I made an appointment and soon we had three staff members arrive to do their initial evaluation. 

Sure enough, upon their evaluation it was discovered he was severely behind in his development. He needed Occupational and Speech Therapy. Soon we had regular home visits by trained therapists who taught him fine and gross motor skills, helped with his sensory issues with water and speech articulation. I began implementing what they taught him and soon there were noticeable improvements in his development. 

He no longer qualified for the in-home services once he turned three, so he began walk-in speech services at his local elementary school after a speech evaluation showed he qualified. Each week he would attend for an hour and once home I'd work with him on what he'd been taught. Today, years later, it's not even noticeable he once had a speech delay, he rides a bike with ease and has overcome his greatest fear... water and swims like a fish.

When he turned three he was evaluated by a local center that screens specifically for Autism. He received a diagnosis for Autism based on many symptoms that matched the criteria for it... head banging when upset, obsession with lining up items (books, cars, toys, trains), meltdowns, speech delay, sensory issues (sensitive to touch or to fabric, to water/light in eyes etc), late crawling, a lack of body muscles used/limp like a noodle when held, late riding a trike, late walking and more. The one symptom he didn't show was a lack of socializing. In fact, he loved to socialize. The only issue was it didn't happen as typical kids his age. Instead, he preferred adults to talk to, communication was often awkward with his peers and the entire conversation would be about a limited topic of his interest that would cause other kids to turn away, leaving him confused. It would be years later his diagnosis was changed to Asperger's, a high functioning form of Autism, as this seemed to fit his traits more accurately. 

In school he was diagnosed with a learning disability in math and reading but not Asperger's or Autism. It's like pulling nails for a school to give an Autism Spectrum diagnosis; we had more than six evaluations and more than a dozen countless ARD's that typically left me feeling unheard and wanting to scream. Yet a learning disability would still give him the extra help (an aide) in the mainstream general classroom to enable him to excel. Along with a diagnosis of ADHD it was finally coming together... we were getting a clear picture of what the issues were so he could be better helped to reach his highest potential in life. 

It's been a long journey and as a mom not one I was prepared for. Yet in that it's made me a better person, a better mom and an advocate. It definitely makes you a more compassionate person. So often people want to spread awareness of only acceptance which is undeniably needed yet they often also deny in the same breath anything needing to be done to help children with special needs. Getting them the help they need ensures a better education which translates to a better future. Because of that there has been much controversy related to Autism Speaks and any organization that sees Autism or Asperger's as something to be cured. The mentality of only acceptance and not a need to help is rampant on Facebook Asperger awareness pages and online websites. It's that mentality that is a disservice to the parents who want to help their child reach their personal best in life. It's important as parents that we support one another, especially the parents new to the world of special needs so they have all of the critical information they need to make the best decisions for their child.

Knowledge is power. 

And by sharing what we know we can each make a profound difference

in not just the life of a child

but an entire family.

© ~ 2014 

10 Tips For Parents Who Are New 
To The World Of Special Needs: 

1. Trust your gut instincts. If you suspect your child's development is not on track, it likely isn't. You know your child best. 

2. Contact your local early child development intervention/ services for an evaluation. You can get a referral from your pediatrician. 

3. Learn what to do during therapy sessions so you can help your child also. The extra help will pay off. 

4. Rest. Take care of yourself. Caring for a special needs child is much more work than a typical child. Get a nap. Have regular date nights. Find a friend who is understanding, will listen and is supportive.

5. Get marriage counseling. This is of utmost importance. Divorce rates are much higher amongst those with special needs children. Often this is because both parents are exhausted, maybe one parent is in denial... often the dad due to his bruised ego. It's during this time family members may deny an issue and you may discover your spouse hid his own childhood developmental delays from you. This may cause a lot of anger on your part and feeling betrayed. There may be conflict on the best therapy for your child. There will be a grieving stage for parents who are learning of their child's diagnosis. This wasn't the life you pictured for your child and it's perfectly normal to grieve that fact. You're not a bad mom or dad to do that. It's natural. This isn't your fault. This didn't happen due to bad parenting, etc. If you find yourself in postpartum depression or depressed due to your child's diagnosis, seek help from your primary doctor, OB/GYN or a psychologist. Your child needs you right now more than ever and it's nothing to be ashamed of if you need help. 

6. With Asperger's there is often what appears to be an ego that's Narcissitic. It's important to work with your child modeling empathy and care for others. 

7. Bullying is rampant with special needs children; especially those with Asperger's, children who have classroom aides, and those who must leave class each week for their speech therapy session. Likewise, the child with Asperger's tries to be social and often doesn't pick up on necessary cues like body language and subject changing which leads them to being outcast by peers who are less than understanding or patient. Children with special needs need understanding and just want to feel included. Counseling would be wise and encouraging open communication with your child. Role playing helps them tremendously. 

8. Show them affection. Often because of touch/sensory issues they don't show affection. It's typically one sided. Giving them regular hugs, positive eye contact (smiles) and affirmation models healthy, typical ways of showing love for others. 

9. They may be explosive and have a difficult time expressing themselves. Saying: "It's okay... take a deep breath. I'm here. I'm listening. Use your speech and explain what's going on" in a calm manner will help them learn over time that having a fit doesn't help anyone yet using our words to express ourselves does. Applied Behavorial Analysis (ABA) is a therapy for changing behavior for the better; using positive reinforcement techniques that you can learn and use at home.

10. Expose them to different things so they don't stay stuck in the one topic they are obsessed with. Many years later, despite an initial obsession with trains, my son now loves science experiments, space, rockets, dinosaurs, running, fishing, swimming, boating, camping, origami, soccer, basketball, etc. Children with Aspergers will learn to branch out if as the parent you encourage it, which has a direct and positive impact on his/her socialization and growth.

Sites to find local support groups: 

The Arc
Easter Seals
Autism Speaks 

It's Normal To Try To Picture The Future But Don't Let Those Thoughts Take Over...

It may seem daunting at the beginning of this journey. As a parent you may only be looking at what needs to be achieved for he or she to thrive in an educational setting. It's normal to be concerned about your child's progress and future, to wonder what is going to happen and how self sufficient they will be one day as an adult. 

Rest assured it's normal to think about this yet don't focus too much on the what if's. Your child will make strides and when you look back one day you will be incredibly proud of his/her perseverance and accomplishments. All those sleepless nights, those grueling evals, the therapies, the frustrating ARD meetings... it will all be worth it. 

You will look back one day and say "Wow, we survived it. And not just that but look how far my child has come." Your heart will swell with love that this little person is your child and you amongst many others were able to make a difference. Yet the difference also lies in you... because now you are also forever changed for the better. 

Celebrate all the achievements, 
all the progress, 
don't lose sight of the amazing accomplishments 
your child has made! 

To My Readers: 

Thank you for reading, 

commenting and sharing! 

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