Ryan was in first grade when he bit another boy at school. Uh huh, really! Yes, he was still biting! He was playing with this boy who kept on putting his arm in front of him. Ryan struggled with using his words, (Don’t ever ask a kid with learning differences why they did something – EVER), so instead, he bit the kid’s arm. Badly. Again, Ryan got in major trouble. Sent to the principal’s office trouble. Of course when he was asked why he did it, he still couldn’t quite put the words together to explain. His response ? “I don’t know.” So, I got the call. Mind you, this was by far not the first call I got from school about Ryan’s behavior. My response? I was mortified, embarrassed, ashamed. Of course, Ryan’s behavior wasn’t acceptable, but at the same time I understood why he did what he did. He just didn’t have the tools in his wheelhouse to do the right thing

When we do something wrong, we feel ashamed (at least I hope so). When our children do something wrong in front of someone else, we really feel ashamed, and embarrassed. After all, we are responsible for our kids actions too. We should have taught them better.But, why do we feel ashamed when our children who have learning differences or mental health issues, just are being who they are? Or we are so ashamed, that we won’t tell anyone, not even our closest friends or family, that our kids are different. We are afraid that we will lose friends, that our families may turn their backs on us, or that they’ll simply just ignore us.

In my personal experience, those things did happen to my family and me. And we discovered who our true friends and family really are. Sad as it was. Because of our honesty and openness, our circle is fairly small. But our small circle is incredibly loving and accepting

There remains a lot of stigma in this country regarding learning differences, ADHD, mental health issues, etc. It’s sad isn’t it? We sure don’t have problems with people who have medical diagnoses like diabetes or cancer. But we still find it so difficult to accept these other “nebulous disorders” that people can’t see. Even with an actual psychiatric diagnosis. We still come up against the idea that it’s something to be hidden or ashamed of. Isn’t it time, really to open up the curtain and help educate others to accept the facts? Yes, this comes from a very personal place. You’ve read it before in a previous posting about people in my own family not accepting that ADHD is a real diagnosis. And yeah, I’m still angry about it. It’s 2020 for heaven’s sake. It’s time we all rise and shine and get it all out there, so that others will be educated and hopefully encourage other parents out there to get their children tested. So many parents still won’t accept that their kids are different or need help.

Yes, it is each of our right to tell who and what and when. And some of you may have just gone through all the testing with your kids, and gotten the diagnosis. This is not for you. You’re going through your own turmoil. My guess is that you have millions of feelings going through your head right now. And I’m here for you, to listen to you and support you.

I want to encourage each and every one of you reading this to consider sharing your stories with me, your family, your friends, your religious community. Reach out. I guarantee that we will all lift you up, love you, encourage you. And you might just help someone else who’s going through something similar.

I wrote the following post three years ago. As I was looking through my old posts, this one caught my eye and I decided to revisit and read it with different eyes and perspective. I was in a different place when I wrote this and yet when I read it, I could still feel all of the pain I felt then. It continues to ring true but I am not as angry and upset at myself as I once was.

My purpose in posting this again is for those readers who haven’t read it before and may have experienced a similar situation in their own life as well as for those who may be coaching families and parents and could gain some insight in how a situation like this may cause pain.

My journey through causing my daughter undue pain is at a point where I have worked through many of these issues with myself and with my daughter. Yes, the scars are still there, but I am at a better place today than I was three years ago.

I’ve titled this post The “Forgotten Child”, because so often the other children in families that are siblings of the special needs child, often do get forgotten.  (Hopefully never physically!)  This is my story about my “forgotten child” and I hope it can help others out there who have more than one
“special” child.

“Oh, you have a daughter as well?”  I have been asked this question numerous times over the years.  “Yes”, I say, “I do.”  “And what is she like?  Is she normal?  Is it difficult for her to have a brother like Ryan?”  Ugh!  I have a daughter who is 2 years older than Ryan, but 3 years ahead of him in school.  What has it been like for her, the “typical” child?  Well, she’s anything but typical- because she has her own story to tell about her life with Ryan, and her life without him.

I truly and majorly failed when it came to raising my daughter.  It’s not that I didn’t spend quality time with her, or that I didn’t love her, or wanted the best for.  But, I refused to see things in her that were warning signs of her physical and mental well being.  I didn’t listen to her complain about her stomach problems (literally for 18 years), I thought she was just complaining and trying to get attention.  I didn’t listen to her complain about her headaches and  joint pain.  (Again for 18 years).  I told her over and over again to stop complaining.  I just thought she was trying to get attention. I expected her to be good in school, and when she wasn’t I told her she wasn’t working hard enough.  When she and her brother argued and didn’t get along (all the time), I blamed her for it.  Because after all, she was the “normal” one.  Well – it all came to a screeching halt 2 months before she went off to college and was diagnosed with celiac disease, (an autoimmune disease, when  ingesting gluten damages the small intestine.)  I DIDN’T LISTEN!  But the doctor did.  That’s when it really hit me.  I ignored her pleas for help.  Oh, the guilt!

I cried along with her and for her.  I have apologized and attempted to make amends.  I still cry for her, and I cry for myself.  There’s nothing I can do to go back and change things.  What I have attempted to do  though is to become a better listener, and to be there more for her.  It doesn’t mean though that I still don’t  fail.  I do and sometimes miserably.  She reminds me of that now and again!  And I’m so in awe of her.  Her resilience and persistence to me is legendary.

What has helped each of us in this family is therapy.   Individual, and together.  I recommend it for everyone who has children who are special, or difficult or just going through a rough patch.  If nothing else, it gives a safe space to let it all out, without judgment.  The puzzle pieces can then be put back in to a working order that gives you some peace.

You know, I’ve been really hard on myself.  And that’s OK to a point.  Be forgiving of yourself.  Move on, like I do every day.

According to Merriam-Webster dictionary, empathy is the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past of present without having the feelings, thoughts, and experience fully communicative do in an objectively explicit manner.

According to Merriam-Webster dictionary, compassion is sympathetic consciousness of others’ distress together with a desire to alleviate it.

Empathy and compassion are not easily found or a given when it comes to friends, family and even educators in regards to our kids with learning differences. It is something that at times has been painfully lacking in Ryan’s life.

One thing that I’ve noticed over the years is the lack of empathy and compassion for those that have a difference or disability that is not physical in nature. If the disability is obvious, it’s “easier’ for others to see and accept those who have these differences. (On a side note – I don’t like to use disability when I define Ryan. I like to use differences. He is not disabled, he learns differently).

Nothing has broken my heart more than to see Ryan being ignored, bullied, and left alone because of his non physical difficulties. He’s lost friends, we as a family have lost friends, and I personally have lost friends. And we’ve even had to deal with family members who do not have the ability to show empathy or compassion.

Compassion and empathy I believe do not come naturally. It needs to be taught to children by their parents, and they need to see it in action by their parents.

So what can we as parents of these spectacular children do? First, we need to practice compassion and empathy. Teach our own children how to treat others. Our own children should learn to treat others the way they would like to be treated. Second, we need to be advocates for our kids. Educate others about who are children are. Tell them how much it hurts us and our children when they are dismissive. Explain how a little kindness and friendliness can go a long way. And last, develop a thick skin. There will be times (and sometimes often) when no matter what we do, others will not understand. It will be their loss.

Ryan is taking a gap year between high school and college. He’s a corps member for the California Conservation Corps. In January, he went on a medical leave for a stress fracture of his heel. Today- finally`-he went back to the CCC. One can imagine how this past few days have been. His dad and I have let him pack what he needs to (with some reminders from us). He hasn’t wanted reminders, and hasn’t wanted our help. Of course in the back of my mind, I’m thinking, “what’s he going to forget?”

Sure enough, this afternoon, I get 2 calls. Phone call #1-Ryan – “Mom, I forgot my……, can you bring it to me? (We’re 30 minutes away). Me: “No, if you need it so bad, call Uber and go to Target.” Phone call #2 – Ryan: Mom, I forgot my……., can you bring it to me?” Me: “No, if you need it so bad, call Uber and go to Target.”

Ugh, I really just wanted to get in my car and take him the things he left at home. I kept tellling myself “Don’t do it!” Do I feel horrible? Yes. Do I feel guilty? Yes. Should I? No. And none of us should. It’s one of the only ways our kids will learn to be independent. We need to let our kids learn how to adult; even our kids with differences.

Now, I’m just waiting for the next call………….

When we were going through the process of having Ryan tested, and then finally having him diagnosed, I spent a lot of time crying. I was so sad and angry. Sad, for Ryan, sad for me, sad for his dad and sad for his sister. Why him, why us? True, physically he was healthy. But at this moment, I realized that his life in many ways would be a struggle. Even, as I write this, I am crying.

Most of us know about Elisabeth Kubler-Ross and her theory of the 5 stages of grief. It primarily focused on death and dying, and the stages, being denial, anger, bargaining, depression and acceptance. Someone might think , “What does this have to do with raising a child with learning differences?”

During one of our visits with his developmental pediatrician, I mentioned how sad and angry I was. She pointed out that I was grieving. Grieving for the child that I thought I was going to have and didn’t. Grieving for Ryan himself. That he would struggle in just about every aspect of his life. Ryan was not going to be the “typical child”. Our doctor encouraged me, to allow myself to go through all of the stages. And let me tell you, that I have. I haven’t gone through them in order. I completely skipped denial. And I continue to go through them-all the time-every day. Some days are easy acceptance days- life is good, and easy. Other days, I try to bargain with God. (I happen to have a strong faith in God. Although there are days I can be very angry at Him). Some days, the very bad ones, I cry a lot and am very sad.

Allow yourself to feel these feelings, and know you aren’t the only one. It sure doesn’t mean you aren’t strong. It means you’re human. It means you haven’t given up. And I believe it makes you a better parent. And if you need to, find a therapist to talk to. It can be carthartic and therapeutic.

Ryan has a plethora of diagnoses.  We started with a few when he was 4  and then added more as he got older and had more testing done.  A few he no longer has.  Most of them he still does, he’s just learned how to manage them.  This post today will just be a list.  The next post I’ll talk about how the testing started. I also may on occasion just write about things that currently happen.   

ADHD, auditory processing disorder, anxiety, proprioceptive disorder, reading comprehension problems, executive function disorder, poor fine motor skills, seizure disorder (resolved), sensory integration disorder. 

Ryan was the kid in preschool who pulled the fire alarm. Ryan was the biter in preschool. Ryan was the kid in preschool who swung his arms around with a PVC pipe just for the joy of it, and came in contact with another kid’s head, and had no idea that he was the one who split the poor child’s forehead open. And Ryan was the kid in preschool who would run across the classroom for something, and trip over every single child in the way. He didn’t see them, only the object of his desire. This all happened when Ryan was 4. Fifteen years have gone since that PVC pipe incident (Really, why PVC pipe was allowed to be played with still puzzles me!) and just the beginning of our foray into evaluations, therapies, medications and IEP’s. Ryan is now getting ready to head off to university this coming fall. It’s been a LONG HARD trip to get here. I hope that my stories and advice will help you, readers. Tomorrow, I’ll share Ryan’s diagnoses.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton