Welcome to the Special Needs Parent Club!

Welcome to the club
Enjoy your complimentary membership to the Special Needs Parent Club!
Okay, I was going to write something humorously, thought provoking, but you know what?  I can’t.
Over the weekend I read a Facebook post from my cousin and fellow SN Mom, stating how she has repeatedly told her limited friends and family that she is unable to be the social butterfly that they would like for her to be.  She said that since she keeps repeating herself, that she was going to post it for everyone, and maybe they would finally understand.
She said that being a Special Needs Mom, takes up all of her time, especially since she also has a neurotypical teenage daughter.  There are Dr.’s appointments, therapy sessions, meetings, as well as her daughter’s extra curricular activities and on top of all this, she is a single mom.  So she is trying to juggle work, the lifestyle of having a child that needs more attention, making sure that her daughter doesn’t feel ignored or neglected, trying to add some balance and do creative and fun family activities as well.  (all of which she is doing wonderfully)  She just doesn’t have time or energy to meet up with the girls, or hang out with the gang.
The comments to her post were very supportive, and I discovered that several  of these people are not only SN parents, but they are all sitting on a branch of my very own family tree.   I commented to one cousin “I didn’t know you were in the club!”
It’s a club we didn’t want to join, but here we are.   Yes, there are a lot of benefits of this membership, but honestly, there is a heavy price that comes with it.
I can’t tell you what it’s like to have a full week of restful sleep.   Even if Buddy has a wonderful night of sleep, I have another night of light sleep,  always keeping an ear out, for doors opening, or tv’s turning on.
I don’t think I have ever left a IEP without tears and disappointment.
I jokingly say that I can change a diaper blindfolded…because I have been “diapering” for almost 27 years.
My son can’t verbally tell me that he doesn’t feel well, or he needs something …or that he loves me.
Buddy will live with me most, if not all of his life.
I have mountains of laundry…clean and dirty.  If you are looking for it, it is either, in the pile of dirty laundry,  in the process of washing or in the pile of clean laundry.   I cannot tell you how many pairs of jeans  Buddy has, or how many blankets he has.  But it seems like I am always buying more.
Sounds like a pretty steep  price to pay doesn’t it?
But what I get in return is so much more.
Last night my 26 year old son, not only slept safely in his room next to mine, but as I was getting him ready to tuck in, he stood up, smiled and grabbed me, pulling me to him, pushing my head to his shoulder and he proceeded to hug me for a good 5 minutes.  Now this made me think of 2 things.  1. he is trying to outsmart me with this distraction, so that I won’t turn off his TV yet….or 2. he is showing me that he loves me…honestly, I think it was both.
Even though the IEPs were often brutal, the meetings that he has now that he is an adult are so much more optimistic and productive.  I actually look forward to seeing the goals that he has met and how we can take the next steps.
Although I am certainly not fond of the diapering part, I do like that my son still needs me.  Not in a “Mom, can I borrow the car” way…but in a “My well being depends on you” way.
No, Buddy can’t verbally tell me something, but he and I have figured each other out and we communicate in our own way.  He knows that he can come to me, and I will figure out what he needs or wants.
The laundry situation isn’t so bad either…he always has fresh linens on his bed, clean clothes and that pile of clean clothes keeps the dogs off my couch.
Oh, and the very best perk of this club… Love, the purest most unconditional love you can ever imagine.  Call me selfish, but I like knowing that he will never love anyone more than he loves me…and the feeling is mutual.
If you asked me 27 years ago if this would be how I pictured my life, and if I would be happy with it….honestly, I would have said no.  If you had asked me when Buddy was diagnosed with autism at the age of 3,  is this how I  pictured my life, and if I would be happy with it… I’m not sure…I imagined it to be much worse.   If you ask me today???
I am very happy with my life. Do I wish that my only child could one day make me a grandmother?  Yes.   Do I wish that my hubby and I could pack up on a whim and go away for the weekend…yeah, it would be nice.  But most of my life’s accomplishments happened because I have and I am, trying to make a better life for my son and those like him.
And this is just the beginning!
~ASM

Advocating for your Child

Written by: Anthony’s Mom aka Autism Advocate

I know some people think that individuals that are ASD are all diagnosed at a young age, at least before leaving elementary school. Well, that is very wrong.

Those diagnosed with ASD in their teenager and adult years, usually have “masked” their symptoms or were misdiagnosed with another diagnoses.

In my son’s case, he was a twin and started developmental delay therapy around 18 months of age, which was around the time he and his twin actually started sitting up on their own, with out any assistant.

Because they were twins, although not premature, it was always said, it is because they are twins. Therefore inadvertently “masking” the signs of autism.

He entered early preschool at age 3 due to developmental delays. From then until he graduated high school is June 2018, my son had an IEP. Until his last school year, it was for OHI (other health impairment).

After requesting for over 7 years, I was finally able to get a complete reevaluation for my son’s IEP. It was finally changed the beginning of his last year of school to 1.  Severe Emotional disorders and 2. Autism Spectrum Disorder. Which to those not familiar, getting an IEP changed from OHI to anything else is hard, and it is extremely hard to get a school system to label Autism as a reason for an IEP.

When I gained full custody of my twins, they were 6 years old. It was a long 3-year court battle, and both boys were subjected to things no child of that age range, no child at all, should be a part of. I am so glad I put my faith in God and trusted things would work out because the truth would always win.

Anthony was around 7 years old when he first went to see a psychiatrist. After the evaluation was complete, he was diagnosed ADHD. From then until 16 years old, he was misdiagnosed with a variety of mood and behavioral disorders, even ODD (oppositional defiant disorder). Even after changing to a great psychiatrist, whom he is still a patient of, at age 8 ½ years the misdiagnoses went on.

After learning about my God Daughter getting diagnosed at 3 years old, with Non-Verbal Autism, I started looking in to what Autism is. I began researching and I started to wonder with everything my son’s going through, “Does my son have Autism.” So, I started asking  his psychiatrist.

He had a comprehensive psychological evaluation performed around 10 years old. The diagnoses were ADHD and Anxiety Disorder. When asked if this evaluation included any testing for Autism, I was made aware that Tricare, the only insurance we had at the time, denied additional testing as his IQ was 126, which to the insurance company meant he could not have autism. Well, at that time, I said ok. As my Goddaughter was non-verbal and I was unsure if that was justified to not perform further assessments.

Starting around 11 ½ years of age, his behaviors of impulsivity and moodiness started to escalate, and his social behaviors started to be noticeably different than of his peers, as well as his anxiety started to soar when he got frustrated. Again, I asked for further assessments to see if he had Autism.

The school administrators and his teachers were constantly telling me his behaviors are that of criminal behaviors. These behaviors are impulsivity, defiance, repetitive movements, and lack of empathy.

Another CPE (comprehensive psychological evaluation) was performed again. His IQ was 114, and his diagnoses were ADHD, Anxiety Disorder, and mood disorder. Mood disorder was changed almost yearly to variety of mood and behavioral diagnoses. Until 15 ½ years old, when the diagnosis of unspecified bipolar was made while at one of his many stays at Brynn Marr Behavioral Health Hospital.

Over the next few days, the next few blogs, I will take you through our turbulent, excruciating, challenging, and extensive excursion we have gone on, and continue to go through. I want to write this blog in order to help educate  and hopefully help others, so that another does not have to go threw what we have had and continue to go through.

I am going to end this blog with this saying, “Never underestimate yourself as the parent of a child with special needs. You will always be your child’s best therapist and advocate.”

~AM-AA

The Best Christmas Present Ever!

When I found out I was pregnant at the tender age of 35 I was at the middle of a good career in commercial insurance, raising an 8 year old daughter and in the beginning stages of divorce.

Once we found out we were pregnant, we tried to reconcile, but it just wasn’t a healthy marriage for me.

When Bella was born prematurely, I was only 5 months along. That was the longest winter in limbo.  I also decided to give up my career in the face of the long road ahead raising 2 girls, especially with one facing an uncertain future.

Many questioned the decisions I made, including giving up a lucrative career, divorcing during pregnancy,  moving from a large city and moving  back to small town North Carolina, to surround myself with my village of family and friends.

When Bella was released from the hospital she was tiny. We didn’t have a home of our own, but my family opened up the doors wide for shelter and support.

Those early years getting Bella to her many Dr appointments and specialists were my top priority. My 8 year old had to grow up fast helping with bottles and diaper changes and tagging along to Speech, Occupational and Physical therapy along with treks to the Shriner’s Hospital in Greenville, SC for Bella’s cerebral palsy issues that affected her walking.

Back then, I felt guilty for all my oldest (we call Cookie) had to give up. Yes, the guilt weighed on me. Was I overlooking Cookie’s needs in order to focus on Bella?

I did the mom thing. I signed her up for basketball and cheerleading and tried to spoil her with material things. Cookie loved being able to be active in sports. She didn’t always like that, if I couldn’t find a trusted family member to watch Bella, meant either we chanced Bella having a meltdown from the noise or lights, and had to leave early or mom just had to let someone else take her to her practices and games.

As a single parent, especially if one of your children is special needs, we all face guilt or try some form of compensation for the other child or children. When the dreaded comment “ It’s always about Bella”  came from Cookie’s mouth, my heart broke for her, myself and Bella.

How do you explain to a child that she will have the privilege to grow up, have friends, drive, date, move away, and be an adult,  while Bella probably never will.

So yes, my life will always be about caring for Bella, but a mother’s heart also cares and prays and fears, for her other children to go out into the world solo one day, does it not?

This Christmas, Cookie gave me the best gift ever. No it wasn’t the Kate Spade purse or the expensive jewelry and makeup she spoiled me with. It was these words:

“Mom I have this nice apartment, a good high paying career at only 22, because of you.

All the times I had to get a “no” or adapt to a situation and see the decisions you made, although others didn’t understand it, with no apologies, and putting me and  Bella first, showed me how to be a responsible, compassionate adult. I’m not spoiled like some of my friends, because of the team you and I had to become, for my sister”.

Those words were a balmy and salve to my heart and soul.  Our children watch us. Not just hear us.

As parents of a child with an exceptional need, may bring  some guilty feeling within. We may question like I did, how do my other kids feel. Cookie is an adult now. I worry about her living  on her own, in another city,  more than I  worry about Bella, because Bella is always safe, with me a bedroom away.

In the beginning, I was just putting one door in front of the other, praying I was making  the best decisions for myself and both my girls.

It’s been an ever changing journey, but I wouldn’t change a thing after getting the best Christmas gift ever,  in Cookie’s words. I will let her continue to believe the Kate Spade was the best gift of the year. But my heart and spirit beg to differ.

~BBF