Being a mom to a child with special needs is NOT fun. Here lately I have seen so many who seem to be “glamorizing” the whole situation or at least using it to find some kind of minute fame. I’m mom to a 22 year old who was diagnosed with a few mental illness issues at the ripe young age of three. A little flashback on my life here. I was 18 and in a relationship with an abusive guy. I had lost my brother when I was 15 and I drifted in search of the love that I lost when he died. I settled for whatever I could get but in this instance I ended up getting more than I ever imagined, and not in a good sense. At four months along he decided he didn’t want a child nor did he want me in his life. He followed me through the hallways at school and as soon as he saw the chance to grab me he did so. I remember his hands around my neck and how tight they became when my feet left the ground. He twisted me around and then slammed me into the counter. My stomach hit hard and I felt a sharp pain. He continued to bash me into the counter as he choked me. I remember waking up at the hospital and all I could think about was my unborn child. Over the remainder of the pregnancy my amniotic fluid slowly leaked and by the time I gave birth there was very little left. I remember them telling me that they had no idea how I had carried the baby and that it was a miracle she was alive. During the delivery her heart stopped multiple times and when she was born she was without oxygen. They told me there was a great chance she would have some type of “mental retardation” due to the lack of O2 to her brain. Over the first couple of years she met most of her milestones on time but there was always something not quite right. As a mom, we just know these types of things. She cried a lot and was hypersensitive to everything. When her words did not form and her agitation became more than noticeable I knew. I just knew. I took her to a pediatrician who told me that she thought she was autistic. She referred her on to another doctor and then to a child psychiatrist. For over a year she endured test after test. They ruled out certain illnesses such as Fragile X and Turner Syndrome. I felt lost. I was young and had no idea what was going on. Finally, the psychiatrist explained to me that in all of her brain scans her brain “lit up” differently than a normal child’s brain. I was told she had symptoms of autism but they were going more along the lines of ADHD as well as ODD. That was the beginning of a rough, rocky road. She was put into speech therapy at age three and finally said her first word, “bubbles”. I was so proud but yet that feeling was short lived as I had to accept the fact that my child was different. Our days were long and never easy. Just going to the grocery store became an obstacle that I did not want to face. Other parents would just stop and stare at me as if I had six heads. I heard the snide remarks “can’t she do something with that brat” as my child screeched loudly and melted upon the ground in a huddled mess because she couldn’t touch each box of cereal on the shelf. The school hated me and just couldn’t handle her. I would receive a call on a daily basis and I never knew what it was going to be next. “She turned the shower on another child in the restroom”, she stole another child’s stuffed animal”, she choked a little girl on the bus because the girl touched her arm”. This was every single day. The smallest things set her off and she just could not control herself. As she aged the aggression became worse. My other child was terrified of her and would lock his doors at night. This happened after she bloodied his nose during an altercation. I went out to get in my car one morning and found my windshield broken out and her school book lying in the seat. She had gotten mad because she couldn’t figure out a problem and thus vented her frustration on my car. Stealing was a huge issue with her. A tiny tot in preschool who came home with a Barney doll that did not belong to her was the beginning of Kleptomaniac’s dream. I knew every time we went into a store to watch her but it never failed that she always managed to sneak something. We are talking anything from pens to make up. I would always take her back to the store and turn the merchandise in. I even asked for security to punish her. All they would do is “scare” her but not enough to make her stop. Lying was another issue we had to deal with. It seemed she would lie to get out of trouble which only landed her in a bigger mess. I never knew when she was telling the truth or making up something to suit her needs. I remember nights curled up on my bathroom floor with the door locked just sobbing. I would question, “why me, why her”? I would get so angry at the whole situation and the fact that my child would never lead a “normal” life like other kids. I spent my days arguing with teachers and principles who had no clue how to handle her and honestly didn’t want to have to. Each year I begged them to hold her back and they refused. I would always get the same story: “She is big for her age and holding her back will only harm her self-esteem. She needs to be around kids her own size”. Really? So the fact that she can’t read, add, or even tell time means nothing? It’s all her “self-esteem”?? I was furious. I had no help and I felt lost. I was trying everything I could to help my child and no one seemed to care. I finally wrote my state representative and explained my circumstance. I was contacted the next day by attorney from the protection and permanency office at the state office. I had an appointment set up and I was ready to roll. At 12 years old my child had been through hundreds of therapists and psychiatrists and we had gotten no where. I was given the “blue book” which contained all of my rights as a parent of a special needs student. I was given advice on how to handle the school system and the steps I needed to take to make them listen to me. The attorney whom I met with accompanied me to an IEP meeting and my child was immediately taken out of regular classes and put into a special education class. Her subjects and assignments were catered to meet her needs. At testing she was allowed to be in a private setting, to have her questions read aloud to her, and to have assistance if she needed. The next two years were much better as far as cooperation goes but not for her behavior or outbursts. At 14 she stole some candy bars from the school and I found the empty box under her bed. That box was worth nearly 200 dollars. I confronted her and she had a complete episodic melt down. She locked herself in her room and she attempted to cut her wrists. I remember the panic I felt and the adrenaline that took over when I had to break her door down. My house was immediately filled with police and EMTs. She was taken in for treatment and evaluation. We were then sent up to Louisville Ky to the Weiskopt Center where she was once again evaluated. On this visit she was diagnosed as having bi-polar disorder with borderline schizophrenic episodes. She carried on with the ODD diagnosis and also said she had mild mental retardation relative to her 64 IQ. That day, as bad as it was, was the turn around we needed. She was put on totally different medications and set up for a different type of therapy. We also learned she had Hashimotos thyroiditis which had NOT helped with her weight and may have made her more aggressive with her previous meds. The good days lasted for a year and then we reverted back yet again. It seemed as if it was truly one step forward and two steps back. We went through medicine after medicine. Some worked great but caused her to have tics or shakes. Some didn’t work at all and were a waste of time. It was a vicious cycle. I can’t even begin to tell you everything but I can tell you one thing, there is NOTHING glamorous or fun about dealing with a child (and now an adult) who fights mental illness. It’s heartbreaking to watch the other kids excel and form bonds with each other while your child struggles to get a D and has to bribe people to be her friend. It’s sad wen you see the pain and heartache in her eyes and there is not a damn thing you can do but hold her and tell her that you love her. It’s tough to see how other people look at her and only see what she does wrong and never see the huge heart she has. It’s gut wrenching when all the other kids are going off to college and starting their lives while yours is still at home unable to work because the school system didn’t find her important enough to teach her the skills they were supposed to. It is really hard when your other kids make A’s and have friends and you feel guilty for bragging on them because you know how inferior it makes her feel. It’s sad that today I am still trying to teach her the important things in life such as counting money and doing simple math. I’m trying to teach her the skills she will need to survive when I am gone.
Today, even as an adult she struggles with so many issues and she still asks “Why me? The thing is, even though it isn’t fun and it is so difficult, it is still rewarding. Having her in my life taught me so many things. She taught me that we are all unique and we HAVE to accept others as they are. She taught me that patience really is a virtue and she taught me to find that patience. She taught me that I’m not perfect and I may fail but no matter what I have to pick myself up and move on. She taught me that even the most difficult person can have a softness underneath that hard shell and sometimes you just have to let the show you. Oh me, so many life lessons learned from one human being who so many see as “flawed”. The main thing she has taught me is that real love IS unconditional. Love is seeing a person for who they are and loving them regardless. It’s driving around the same block all night long because your child is in a crisis center, after having a meltdown, and you miss her so much you can’t go home without her. It’s picking her up off the grocery store floor and holding her tight next to your chest as she trembles and screams while other people are shooting you death glares because they just DON’T GET IT. It’s learning to pick your battles and letting the little things go because life isn’t about winning the argument. I could go on and on about what love is but I am sure if you have children then you know exactly what I am talking about.
Today I have a toddler who shows all the signs of having “something” wrong. As a mom who has been there I feel it. To say the least, I am scared shit-less and my stomach turns. I don’t want to have to relive all the insanity but I don’t have a choice. As I stood in the lobby of her doctor’s office the other day I began to cry. She was upset and needless to say when she gets upset everyone within a five mile radius knows about it. She didn’t want to leave before she touched every chair in the lobby, even those people were sitting in. After she finished and then climbed on top of the toy table I just went over and sat down by her and looked into her eyes. She was distant but there. I cried as I told her I loved her and I slowly talked her down off the table. Once again I was met with the glares and the eye rolls and I knew what they were thinking….”why don’t she just spank that kid”. Well, when you live in my home, walk in my shoes, and deal with a special needs child for just one day then maybe, just maybe, you will understand. So, for you parents with ANY type of special needs child, my heart goes out to you. I have nothing but love and respect for you. For those of you without a child like this, please take a second and think before you judge. Before you roll your eyes or say something mean, stop to think, maybe this child has something going on besides just being a “terrible toddler”.
Please be kind.
Someday, you never know when, you may need some kindness splashed your way.
I love my children, all of them, completely and unconditionally. I am thankful that I am their mama and that I was allowed to be part of their lives.
Sarah Beth, you gave me life. You changed me for the better and I am so lucky to have you.