“The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.”
It has been a while since I sat down and wrote on my blog. It is due to the demands of motherhood taking over my every waking second. But I realized that I missed writing as it is a cathartic process for me and gives people a window into this crazy thing we call life.
The entire year of 2013, the whole 2 1//2 months of it have been filled with hospitals and doctors and medical tests for my snowflake. It has been exhausting. I thought I already knew the definition of exhausting just parenting a child with a mental impairment, autism, severe short term memory loss and severe auditory processing disorder. But, it appears I hadn’t yet understood true exhaustion. I think adding chronically ill to all the other issues will make the full definition of full on exhaustion.
I don’t know what brought all of this on. I have no idea what is going on with my child. It is extremely hard when she cannot accurately express what she is feeling because of her language delay and processing delay. The thing is, I believe my child (usually). She has a very, very hard time expressing her needs and things that hurt or when she does not feel well. So, when she does express pain or discomfort, which is not often, I pay attention.
About 2 months ago, I noticed she was very, very tired, asking to go to bed early and sleeping every time she got a chance. She began to express more discomfort that involved practically every symptom from head to toe. It has been very baffling. The most baffling of all complaints was that her “eye was blurry” and she was dizzy. I had gotten her eyes checked for new glasses and honestly, I thought she was just anxious for her new glasses and was expressing what she processed about the eye doctor saying her left eye needed more correction that the right eye. So, I was frustrated with her constant expression that her eye was blurry. The other thing she kept saying that I couldn’t figure out, still can’t, is that she was dizzy. She would say this and say that she felt like she was tipping over, yet she had few balance checks and for the most part had no trouble walking. Honestly, I was frustrated. She had constant headaches, dizziness, problems with her eyes, her stomach hurt and she was having spells where she would be very nauseous and her stomach would hurt really bad, her legs would hurt and so on. It became very overwhelming. I got nowhere at the local ER where I took her when she started sleeping 20 out of 24 hours, her speech seemed to be very slow and the headache and dizziness and eye blurriness all combined and became very alarming and the doctor-on-call told me to take her in. The ER doctors that attended her needed some serious schooling in handling children with special needs. They refused to listen to me when I told them of her delays and impairments and when she could not answer some questions about time, an elusive concept for her, they said they couldn’t help her. I mean really. How do they help infants who cannot talk and tell them what they need to know or otherwise handicapped individuals? I was steaming mad. I contacted her neurologist and told her of the issues we were having and the neurologist wanted us to make the trip to Detroit Children’s Hospital for a long term EEG in the event that my snowflake was having “sub-clinical seizures” which are seizures that can only be seen on the EEG. But this time instead of just having the EEG, they were admitting her to the floor. It turned out not to be sub-clinical seizures. She was still having seizure activity even on all the anti-seizure meds, but no sub-clinical seizures. I actually, although very nervous, was eagerly anticipating that we would get a solution to her problems. Instead, it was the beginning of what I would hear again and again like a broken record. I was told things such as “ignore it and it will go away” or “we cannot help her because she isn’t able to tell us accurately what she is experiencing,” or “perhaps it is all psychological” and so on. These statements infuriated me. In fact they still boil my blood. I know my girl. Do I have doubts in my head sometimes? Sure I do. Have I thrown all these statements out without consideration? No. But, if anyone knows their child, I know my snowflake. She is different. She is unique and she does nothing the easy way. I mean, come on. It has taken me over two months to figure out that sometimes what she is saying is delayed processing. It isn’t that it is happening right at the time she says it, but that it has happened recently and bothered her. I am not happy that it has taken me so long even to figure that out. We got no answers at Detroit Children’s Hospital. None! We were dismissed as though we were just all crazy. I was heartbroken, exhausted and frustrated. I had my moments where I questioned everything. I had her psychiatrist screen her for depression. But in my gut, I still believed my little snowflake. I couldn’t shake the feeling that something was really wrong. Fast forward several weeks. We have had lots of blood work, other testing and the only thing that has shown up was mononucleosis and strep throat. The only reason we got those diagnosis’ were because I strongly requested the doctor do the test even though there was not a lot to back up my theory other than my gut feelings. Guess what? My gut was right. I don’t know when I am going to stop second guessing my intuition and go with it. That would sure save me some grief.
A week ago, my snowflake had some serious falls. Whether they were seizures or falls from dizziness, we do not know. All we know is that she was very banged up and missed being seriously injured. The doctor ordered a wheelchair because we do not know what is happening and we do not want her to seriously injure herself, especially her head. However, the insurance won’t pay for it. So, now I have to worry about a out-of-the-blue fall and serious injury. Having a lengthy conversation with her pediatrician this week left me with even more questions than answers. She, also, insinuated that perhaps this was psychological. She even went as far as to suggest that my girl fell on purpose. Some of the things she said irritated me because I KNOW my child and I know what her capabilities are and what was suggested truly is outside of her capabilities, other things just left me with questions in my head.
Then there is me loosing it. My failing to listen to my intuition. Me failing to be compassionate. Me failing to connect the dots myself. She said she had a headache, but following behavior indicated she most certainly did not have a headache. I got angry. I forgot reason, I forgot that I KNOW my girl and I forgot her processing ability. We had a serious discussion about lying. Later, on further reflection, I figured out she wasn’t lying intentionally. She wasn’t even lying. She was just processing slow. Her head had hurt. It was just forgot. You cannot even imagine how many times I have cursed myself for how I responded that day. There is a payment for my reaction. She doesn’t want to or know how to tell me how she feels because she is afraid of upsetting me. She cannot understand why I responded the way I did when she said she had a headache and she clearly didn’t. So now I have made a huge mess of an already bewildering mix of a mess.
I am so mad at myself. I am mad at letting other people and physicians get under my skin and in my head and make me second guess and ignore my gut. But now I have created a bit more of a problem. If she has withdrawn from telling me what is wrong, I have to go back to my intuition and constantly watching her behavior and her attitudes to determine if she is feeling bad of good or so-so. Intuition is a “forgotten gift” as Einstein stated. I need to keep moving forward and getting these things solved for my kiddo so that she can be feeling back to herself. I cannot ever think of a time where my intuition steered me wrong and I don’t think it will start now. Something is wrong and we will solve it. It may take time and it may take some persistence, but we will get there.
About 3 weeks ago, my daughter went with her special needs class and another special needs class with their mentors to a minor league baseball game. She was hit with a foul ball, or a home run depending on what story you listen to. Anyway, she was hit very, very hard. I asked her where the teachers were when she was hit and she indicated they were back a ways all together talking. She said her friend was sitting on one side of her and the no one was on the other side of her. Her friend she was sitting with noticed she was hit with the baseball and then an older boy noticed and both of them asked if she was ok. Apparently, Loon’s personnel kept offering her ice, but she wouldn’t take it because she did not understand why they were giving it to her an she was embarrassed. There was no adult with the group facilitating the conversation and helping her understand the ice was to put on the place where she was hit by the ball so that it would not swell and hurt as bad. According to KM, none of the teachers knew she was hit until near the time for the kids to go back to the bus and she showed her teacher the new baseball she got and told him that she was hit by a baseball and it really, really hurt.
I brought this up at the REED meeting I had with the special education IEP team. The supervisor was instantly on the defensive and angry that I asked. When I shared KM’s version of the story, she said, “well, that’s KM for you; that’s just part of her cognitive impairment. They said that she was supervised the entire time including the fact that the lady who would be her teacher next year was sitting next to her during the game and at the time she was hit by the ball. My daughter swears there was no adult sitting next to her at the game at all and she has no recollection if that teacher was even there, because she has only met the teacher once or twice. Anyway, the school claims that she was supervised the whole time, never showed any signs of distress or pain.
There is no collision of the two stories at any part. They are completely different, as different as night and day. KM has a very slow processing system and it takes days for me to hear the complete story in bits and pieces as she perceives it. Sometimes I can figure things out and it is obviously a perception problem. But I have begun to think I have been doing a disservice to my daughter by not giving more attention to the thigns she has told me about the aid being unkind to her or other incidents at school. I have addressed them, but they have always been waved off as just misconstrued by KM. While I realize that often there is discrepancy between reality and perception in the world of autism an cognitive impairment, I also realize that not everything my daughter says is wrong. Not all of her perceptions are wrong.
In this case, she has never wavered from her story. The questions I have asked her have been so basic, a five year old could answer the question. She has no idea there is a dispute between the school and me. There is no reason for her, even if she could, give me answers that would upset me. There is plenty of reason, though, for the school to concoct a story to cover the fact that a student got injured in their care and they did not take care of her injury. In fact, I did not even hear about it from the school until about 3 hours later, after KM had gotten off the school bus limping and saying how bad her leg hurt.
Ashamedly, I brushed it off when she told me because I believed the school when they said it was no big deal. I believed it until I actually saw the injury. Then I had lots and lots of questions. If my daughter says something hurts, that is because is severely hurts. She has a ridiculously high pain tolerance, typical of many autism children. Often, I don’t find out something is wrong with her until it is so serious because she doesn’t complain.
KM has no way of advocating for herself, she cannot make people believe her, she doesn’t even have the language capability to express the needs she has. I am her voice. I am her advocate. Now I have the very uncomfortable position of fighting for the fact that my daughter was left unattended while injured. Sure, they could not have helped the fact that she was hit by a ball, but they sure could have helped facilitate using the ice after the injury and making sure she was ok and even having her stay off her leg if she was limping around like she said she was. It bothers me that I do not feel like my daughter is safe at school. It bothers me that she was so severely injured without help, that she vomited all over herself early one morning on the bus but it was not discovered until the end of the day when she was found at the sink in the room trying to clean off her back pack. It bothers me that I walked in to pick her up late one day and found her in the midst of a seizure and no one thought anything about it or even realized it. It bothers me that people can so easily dismiss what she has to say as just part of her disability. It bothers me that I have bought into what the school has always told me instead of being more careful to really hear my daughter. Sure perception and reality can be completely different in the world of autism and cognitive impairment, but it doesn’t always have to be and I believe in this case it is not. Fighting this probably will not get me anywhere. The only thing I can hope is that they start allowing me to go on the school field trips so that I can keep her safe and keep an eye on her and that they realize that they really, really need to pay attention to her.
She said she hurt and told her teacher she was hurt. She said she was limping around and couldn’t walk easy because it hurt. I believe her.
Here is a picture of the injury a few hours after it happened. What do you think?
Life has been hard and challenging lately. It has been full of meltdowns, fighting, sibling rivalry, agression and stress. I had all but given in and given up when I reached out in a post to other moms of special needs children and was thrown a lifeline. I was able to breathe again. The world that was colapsing in on me became stationary. I began to find sleep again. Not exactly sleep without nightmares, but sleep nonetheless. I found hope again. I discovered I was not alone in this journey.
However, the friction the brokeness of connection between my snowflake and I continued to haunt me. I tried to find ways back, to reconnect, to dial back the stress and move and talk more slowly and calmly. Nothing seemed to work.
Then today, one of the rushed days due to Physical Therapy and Speech Therapy appointments after picking up her sister after school, I tried to connect again in the brief moments we had alone. It felt so pointless, so hopeless. Because it is our routine we run through a scripted conversation of communication skills: “How are you?” “How was your day?” ” What did you do today?” Then I try to listen and focus on answers that are disjointed, confused and often off topic. We work hard on conversational skills. I hope one day she will put it to use with someone other than me in a spontaneous way. Anyway, I got her doing her homework on the way to therapy and we hit the road. She was in a good mood, uncharacteristically happy and that lightened my mood. I have had her for 2 1/2 years and I have no idea what really makes her tick other than candy and maybe that was why she was in a good mood. Her teacher has little control over her class and has decided bribing them with sweets is a good ploy. I find it frustrating. I wish all the people who give my child candy would take them afterwards as well as to the dentist and pay the dentist bill. Anyway, I digress.
I got to the therapy building and took her in. I told the therapist that I would be gone for a few minutes during the therapy session while I went to pick up my snowflake’s older sister. I assured my snowflake that I would be right back waiting for her. As I turned to leave, she grabbed me, stood on her tip toes and kissed me on the forehead. I was stunned. She rarely shows spontaneous affection. She will show “forced” affection. For example, when she goes to bed, I ask for a hug and a kiss and she sees her sister do it so she tries to comply by copying her sister. But rare is that day she will spontaneously show affection. After all the trials of the last several weeks, I did not know what to do. I was literally stopped dead in my tracks. My brain though, was smoking with the thoughts whirring about in it.
Maybe all those attempts at connecting were not a failure after all. Maybe it was not hopeless. Maybe, just maybe she really did feel love and know I loved her. Maybe, just maybe she was able to feel and express love for me. Maybe, just maybe my effort, my work, my attempts had not been pointless after all. I recovered my composer and kissed her back and told her I loved her and reminded her I would be back really soon and I left.
God knows I needed this. God knows I was at my wits end and running out of hope and God knew that that little, spontaneous, beautiful kiss could ease all the saddness, the stress, the feelings of loss and hopelessness. God knew I needed just a bit more hope in a more tangeable form. God delivered it in one unexpected, spontaneous kiss.
I totally echo these words too. I understand the word too. Excellent post.
I have struggled to write my blog of late mostly because I feel lost. I wish I could capture a thousand more moments just like were captured in the above vacation we took for Christmas. It was a moment of sheer joy and amazement. I wish her life could be filled with these moments. But, they are few and too far between.
In the reality that is our life, we struggle to communicate. She has begun to use very big words of late, especially words she hears me or her older sister use. She may even use them in the correct context. But when you pin her on the meaning of what she has just said, she has no idea. Then, there are days like tonight where she saw a concept on television where all she could do was giggle and make a face that showed disgust, but she could not put into words what disturbed her about the concept so that I could help straighten out her thoughts. That is the typical day of communication, or the lack thereof.
I cannot seem to get her school to understand that the lack of understanding of language is an important skill that needs to be worked on. I cannot get the school to understand that I cannot do it all and I cannot seem to get the insurance to understand that getting outside language therapy is an urgent necessity because every day that we wait is another day that she is in a communication box that is almost impenetrable. I am tired of doctors looking at me like I don’t know what I am talking about because, after all, I am only her adoptive mom.
We have had successes in the past few weeks. The biggest success is that we survived Christmas…no, not just survived, we enjoyed Christmas for the first time since the girls came to me. She managed to have appropriate emotions and allow her sister and I to explain her toys to her. She did not remember ever putting up a Christmas tree, but she remembered specific things about the ornament she has collected since coming to me. So far, we have not had any meltdowns and she has stayed in bed and let the rest of the house sleep until she is able to get out of her room. She has finally followed this rule. This has taken me over 2 1/2 years to get her to do. Victories are there. People may see them as silly, or not age-appropriate, or just bad parenting on my part, but they don’t live in my shoes. Success is success and I will celebrate it no matter how small.
I just dread the start up of school again in the new year because it requires me to go back to the advocate’s role and fight for services again. It requires me to find a school that won’t completely mainstream her in 6th grade because it would be overly chaotic and noneducational. I am not against some classes with her peers, but I know my daughter and I know what she needs and mainstreaming her would be a disaster. But, mainstreaming is popular in my area. Of course, that makes me unpopular. So goes the fight.
All I wish is that I could stop time, straighten out everything for her and get her the help she needs instead of always fighting the system, always fighting the insurance, always fighting to meet her needs, always fighting to understand her needs, to understand her, always fighting.
This is why my blog has been quiet for a while. I have been laid out from all the fighting, lost because I have only a tiny support system that truly understands our needs. The rest find it more easy to judge me.
I want my blog to be a positive place of growth and progress. But, cognitive impairments, autism, and all the rest of the “labels” just are not glamorous and positive. They have their moments and some of those moments are brilliant, but I am beginning to see that this life will, at least for the next few years, require me to fight. So, I guess I am going to have to figure out something I have yet to figure out. I am going to have to figure out how to pace myself, pick my battles and give myself a break. None of those lessons have I learned. So, it looks like there is just more than one of us on a learning curve. Personal growth is never a bad thing. So, we will forge ahead and keep fighting.
Me: You are a funny bird!
KM: I am not a bird, I am human. How can I be funny??!
On another day
Me: You are a crab today
KM: I am not a crab. I do not walk like this (imitating a crab walk)
And yet another day:
Friend: I can’t find my flip flop
KM: I can. I have my glasses on.
It has been a long time since I was on my blog. I don’t know why exactly, except I have been tired and overwhelmed and lost in this world of PDD-NOS, seizures, autism, cognitive impairment, CAPD, physical therapy, severe short term memory loss concerns and so on. I have been lost without guidance. I have been mad, frustrated, hurt, and just plain stuck.
Mostly, I have been in a communication stuck mode. Communication, while sometimes very amusing, is mostly very maddening and only getting worse. Not being able to effectively communicate with your child is maddening and frightening. When I need KM to run or to hurry and she looks at me confused and barely quickens her pace, panic overwhelms me inside thinking of dangerous scenarios where I really need her to process quickly that I really need her to run immediately and I find myself thinking and fearing the worst. How can she not quickly understand the word “run” or the word “hurry”?
Recently, she started 5th grade. She had picked up this habit of creating her own words and using them when she cannot find the word she needs to express herself or her needs. I try to get her to repeat herself because I cannot understand what she is saying and when I ask her to repeat herself, she gets frustrated and just shuts down with a “never mind”! So, now not only do I have a child that is so literal and cannot process what is being said to her nor can she find the words she needs to communicate to others, now if I don’t get what she is saying the first time, I might as well realize I will never get it because she is so frustrated and she probably is just as frustrated with her inability to communicate as I am with being unable to communicate with her.
I take her to physical therapy for an evaluation since her neurologist says she needs to go there and speech/language therapy. I find myself telling them the same story I tell every other specialist. Why is the school not helping her with speech/language, Occupational Therapy, Physical Therapy, etc. The school refuses because her abilities are commiserate to her cognitive abilities. So, even though she needs to progress, they will not help, they will not try, they don’t care. I am left holding the bag trying to figure out which of her needs hold the most importance and what she needs the most. I am left fighting frustration and tears as I hear therapies she needs for her central auditory processing disorder, CAPD, is not covered by insurance and costs over a thousand dollars. She has been dropped through the cracks for the majority of her life and how can I help her be able to function in life as she grows up.
The older she gets, the more painfully obvious her delays. The more pressing it feels to get her the help she needs. If she cannot effectively communicate with those around her, how is she ever going to be able to function even semi-independently on her own. No matter how hard I try, I feel like I am failing her. I feel constantly lost, stuck, impotent against the overwhelming needs.
Then I have to worry about meeting her older sister’s needs. She is so impressionable, so vulnerable, so much in need of a mom that can meet her needs and be able to focus solely on her. Being a teenager is not so easy neither is dealing with the demons of her past.
I wish it weren’t so hard to get help and aid to meet my child’s needs. I wish I were smarter, richer, more patient and had more time. I wish the girls had come to me sooner. I feel badly, sometimes, that these beautiful children got only me when perhaps they could have gotten someone with more resources, maybe a two-parent home, better health insurance, etc.
But they got me. I will be hanged before I will give up fighting for my beautiful, sweet, complicated daughter. I will not quit trying to find ways to communicate with her and teach her how to communicate with others. I will not quit trying to find ways to help her process and deal with the cruelty of her past so that it does not forever hold her in its tangled grasp. I will not give up. Somehow, we will find our way and somehow, if with no one else but me, she and I will develop the ability to communicate. Somehow. Someway. Autism will not win. I won’t let it.
Lately, our house has been filled with violence, chaos, anger, frustration, tears, and raging hormones. It has not been fun. In fact, it has been so chaotic and disharmonious, I would prefer to go to bed and just pull the covers over my head and pretend I don’t exist.
You see, I have an 10 year-old, soon to be 11 in the next 3 weeks, who is nearly 5′ tall and a developing teenage body with hormones raging. She is violent, angry, defiant, overly sensitive, and exhausting to parent. I have been thinking over and over how I can change the tone in our home. I am so tired of correcting her and trying to offset the negative with more positive than negative and that is hard to do when there seems to be less positive than negative and it really takes a lot of thought and intentional parenting to come up with a lot of positives even for the tiniest things. But, I am trying really hard.
However, upon reflecting on the predicament in our home and brainstorming ways to fix it, I realized that not only am I part of the problem, I am also part of the solution. The solution is absolutely almost impossible for my brain to do. I am looking at an 11 year-old, for all intents and purposes, who is going on about a 5 year-old developmental level. Imagine an 11 year-old who is really only 5 years old at best. It requires mental gymnastics for me to try to stay on top of my game parenting her sister who is exceptionally bright and then turn my brain around and look at a child almost as tall as me in a teenage body and think 5 years old in behavior and in consequences for bad behavior. To add to the chaos is the fact that my little, big snowflake’s issues is her severe short-term memory loss. I can give her consequences for negative behaviors; the only problem with this is that within a couple minutes, she has no idea why she is receiving consequences. The only thing she sees is that she is being isolated in time-out or put in bed early and perceives it as I do not want her to be with me and the rest of the family. This could not be any farther than the truth. The fact is that I desperately want her to be with me. I want to be able to cuddle her and not be so frustrated with her that I don’t even want to be in the same room as her. I desperately want to help solve the issues that make her violently angry. Part of this is also complicated by her severe auditory processing disorder. What she hears is not usually what is being said so her perceptions are almost always skewed. Some days, in fact, most days feel like a ongoing loosing battle.
When analyzing all of these facts, I realized that some of the fault was mine. Since I have only had her a year-and-a-half, and a good part of the first year was spent just getting her issues diagnosed, it is not like having raised her since an infant or toddler and growing at her pace and getting my feet under me and used to her delays. I have had to learn constantly on a run to keep up with the medical and mental diagnoses and am trying to just keep my head above water to keep from drowning. Nevertheless, the problem is partly mine. I see her, I look at her and my brain does not automatically say her behavior is consistent with her developmental age, so relax and stay calm. This is appropriate for her stage of neurological development. No, I look at her, see the pre-teen child and automatically say, wrong behavior, you know better than this! In some ways, this is not all bad, as a friend of mine pointed out to me, because it is constantly pushing her forward to work harder at her behavior and work harder at developing those age-appropriate skills. But, I think, in some ways, it is doing more damage because it is causing her to give up because it seems like no matter which way she turns, she is always in trouble. It also is causing self-esteem issues. She already has enough self-esteem issues because she is cognizant enough to realize she is different from everyone and she sees it as a negative thing, not a positive thing. She is constantly in competition with her neurotypical sister who is exceptionally bright. She wants to do everything and I do mean everything exactly like her sister and then ask me who does the activity best. That is as bad as asking someone whether your outfit makes you look fat. It puts me in a no-win situation. Nevertheless, it doesn’t change the fact that I am part of the problem and the solution.
Somehow, I have to start remember 5 year old, 5 years old, 5 years old, 5 years old! Her behavior is consistent with 5 years old. RELAX! Remember what a 5 year old acts like and what behavior should be expected and accepted and deliver consequences accordingly. It doesn’t fix the severe short-term memory issue; neither does it fix the severe auditory processing issues and nothing that I am aware of will help me with these problems, but if I can just relax and stop expecting her to act at her chronological age, it would be a start.
The guilt that I feel at being so frustrated with her to the point of not even wanting to be around her is almost overwhelming. I love her, and I love her intensely. I just hate the behavior and much of the behavior is inappropriate even for a 5 year-old. However, she does not yet have the ability or coping skills to manage and control these behaviors. I see my road as wrong and grueling and exhausting, but it makes those victories, no matter how small, that much sweeter. It is hard, so very hard to be judged by other people when she is acting up, being petty, being her when other people have no idea what I am going through or what makes her tick and what sets her off. Add to this severe PTSD from her past and severe anxiety and depression due to a variety of factors and it spells a twisted, almost impossible to unravel mess.
What I have figured out is that I MUST relax. I MUST find it inside of me to move past the grief and loss of how I thought my life would be raising these children and accept what is reality. I never, ever knew any of these issues going in to the adoption because it was information withheld or heads turned the other way and no testing or therapy given. Her foster home parent said she was just acting out to get attention and refused to acknowledge that she had delays and autism as well as other mental and neurological disorders. I was, in effect, blindsided by all this stuff. But it is what it is. Maybe I can change it slowly and turn some of the negative into positive over time, but it is going to take work, a lot of hard, hard work. My snowflake deserves it. She deserves someone who believes in her and lifts her up, not tears her down. She deserves the very best I can give her, not my defeated, want to give up attitude that comes over me every now and again. She deserves no less than my best in advocating for her and in parenting her. I have to get past the grief and the guilt and adjust my sails according to the course that is set instead of fighting the storm and the course I wanted to go on. I am sure that when I do that, life will be less complicated and I will be able to build my snowflake up and will be able to find more positive than negative. I have to parent very intentionally and very intentionally I promise myself and her, I will parent.
Imagine with me a 5 year-old child trapped in a growing 11 year-old body. It is a little twisted, isn’t it? It is even harder to handle, to parent, to be in the same room with many days. My snowflake has yet another facet to her flake and it is not a pretty facet. She is rapidly growing and developing and has hit puberty full force. I cannot imagine how hard it must be for her to be developmentally in her abilities and emotions at a 5 year-old level but be 11 years of age. My brain does not work that way. I have tried to make it, but it still won’t go there. All I do know is that my sweet snowflake has turned into a well, I have no nice words for it. I don’t even have a word that aptly describes it, to be honest.
My sweet, lovable child has been replaced with a jealous, defiant, angry, hateful child. The only time she is happy is when she is doing what she wants and no one is around her. When her sister is around and the snowflake is not getting from her sister what she wants, her temper tantrums are exactly like a naughty 4/5 year-old would thrown, maybe even worse. I certainly hope this is not the way it will be for the next 7 years. I don’t know if I can endure it without needing medication! The bad part is she is like this on medication. I cannot imagine, nor do I want to, how much worse she would be without medication.
From everything I have read and heard, this should get better and won’t last and it is normal. It is like a 5 year-old child going through puberty and they do not have the ability to comprehend the onslaught of emotions, feelings and other things experience during puberty. It is a mind blowing experience for both of us, I suppose. No more that I can be in her brain and understand how weird the world seems to be to her and I cannot understand, neither can she understand my predicament of looking at a growing child who is almost 5′ and development of a young teenager (even though she is not even 11 years-old yet) and remember that her behavior is that of a 4/5 year-old and that is exactly where she is neurologically. It is so hard for me to look at her and keep these things in context while disciplining her, keeping in mind 5 year-old, 5 year-old, 5 year-old.
While there are some experiences of this journey I wouldn’t trade for anything, this particular experience I would not even wish on my worst enemy. If any of you out in blog land have any advice for me to help me through this, I am all ears. I do not love my little snowflake any less. Make sure you know that. I just find her more challenging than ever before. But, I have never been one to run from a challenge. The more challenging it is, the harder I fight. So, even though I feel like this challenge may have backed me in a corner, I WILL find my footing and come back out with more compassion and love and fighting with all I have to maintain my composure and my sanity and giving her all the love that I have to give.
The title of my blog is the The Simile of Autism and Snowflakes and tonight I am seeing anew the snowflake.
I wish I could say I was feeling the snowflake in a positive light, but today is just not going to be one of those days. The snowflake actually feels like a huge ball of snowflakes that have steamrolled over me.
Testing has showed that my daughter is without question moderately cognitively impaired. I don’t know why that facet of the snowflake out of all the other facets such as, autism, sensory processing disorder, auditory processing disorder, severe short term memory, PTSD, depression, severe anxiety, seizures, etc., seems to be more weighty than the others, but it is a heavy burden.
I guess the reason it seems so weighty is that there is no therapy way out or way to improvement that I know. If knowledge is power, at this point I am inept because I know no way of helping this facet of her life. I know no way of improving it. All I know is that I have a child, an almost 11 year old child that is about 5′ tall and developing quickly and she operates about half her age. Even though she has improved in reading and math this year in leaps and bounds, she has improved little anywhere else. Don’t get me wrong. I am extremely excited about the progress in those two subjects. They are more necessary than science and history when it comes to independent living skills. But I guess that is what bothers me. What kind of life will she have? How will she ever be able to live independently? How will I be able to live doing everything for her for the rest of my life and who will care for her when I am gone? Could I ever be able to move her to a group home? These are heavy burdens and heavy thoughts. When I adopted her, I had no idea that I would be given a beautiful, complex snowflake. Parents don’t know even with biological children what they will get. I do not regret adopting her or her sister. If I could go back and change it knowing what I know today, would I adopt them? I can say I would have given it longer thought and being single these things would have troubled me, but I would not have changed my mind because I was ignorant of the challenges I would face as a parent of a special needs child. I believed I could take on the world and believe me, I have and most of the time, I have won. I was ignorant of the fact that my life would become isolated and I would feel for the most part that friends, true friends, were few and far between because they were scared of my snowflake interacting with their children. I was ignorant of the cruelty of people and the fact that some friends would turn their backs on me and my children as though we had the plague.
But, whatever, to all of that. Those things are minor to the heavy questions that trouble my mind and heart tonight. I just want the best for my beautiful snowflake and I feel so helpless, and wondering just how effective any therapy I can get on my own for her will be effective. The school has ruled out therapy because in their opinion, she is never going to change regardless of what therapy she gets. She is just…are they right? Is it never going to change and these questions going to demand answers?
What a complex, beautiful, challenging snowflake.
“Mom, can I go out and play?”
She has a beautiful wooden swing set and lookout place, slide and sandbox.
Sure, go outside and play.
Eventually, I look out the window and check on her.
She has two sticks in her hand just talking away.
She is in her own world.
She doesn’t care about the swing-set today.
She used to until someone found a bug in the play phone up there.
I thought she would forget.
The swing-set sits silent and unused and the commonly found sticks worth gold to her.
Why does it even bother me? After all, she is outdoors, safely enclosed in the large yard.
She is happy.
She is loved.
She is safe.
Why can’t I accept her in her world?
But she is in her own world.
But I want her to be in my world. I want her to be present, not absent from me.
There is only one word for this. Just one.