Friday, April 29, 2016

Somewhere on the Spectrum. Written by Single Mum of 3

Somewhere on the Spectrum

In 2004, I gave birth to a beautiful baby boy. He was the ideal baby, he barely cried, he would feed and then sleep four hours, feed then sleep four hours. I felt so blessed!

At three months old, he was hospitalized with pneumonia, he recovered well. As soon as I brought him home, he was different, he would cry constantly, he slept a total of three hours per 24 hour period. I put it down to him just getting over his illness. As the months went on the constant crying continued. If I held him, he cried more. I felt useless. 

At a year old I called my Health visitor. I begged her to come and see me and advise me. She spent an hour watching my son and asking me questions about him. She pointed out that he didn't respond to his name, didn't point, hadn't developed the pincer grip, barely smiled and spent his time just lining up his toy cars. It was my first child, I was very young and didn't know this was a problem. The Health visitor was lovely, she set up a care package, for someone to come out and give me tips on how to encourage my son to sleep better. Nothing worked.

The Health visitor referred my son to the child development centre, he was seen at 24 months old. I remember sitting in the doctor's room, with the Health visitor. My son had climbed onto the bed and was picking the paper sheet into tiny pieces. He was rocking, flapping and shouting "urgh urgh urgh" To me, this was just my son, he had always done this. I was asked hundreds of questions, my son was observed, two and a half hours later, the doctor said " your son has autism."

I remember replying " ok." I wasn't upset, or shocked, because I had never heard of autism before. I was 18 years old. The doctor didn't give me any information, apart from a leaflet. I left the building, called my mum and told her my son had autism. She told me not to worry, everything would be OK.

I was becoming confused, so later that day I called my Health visitor and asked exactly what autism was. She explained it was a lifelong social, emotional and communication disorder. She told me that my son may never talk, may have severe learning difficulties, she said he would always be in his own little world. I cried. I broke down and cried. I just imagined my perfect little boy being stuck in a two year old head for the rest of his life. I was scared. How would I cope? I was barely coping as it was on less than 3 hours sleep a night, how would I cope like this forever?

As the weeks went on, appointment letters were coming through the door, one after the other. I attended these appointments in a blur. First was speech therapy. After two sessions they discharged my son because he was too distressed at each appointment, they said to come back when he was older. He attended sensory therapy, after 3 sessions they said he was too hyperactive to take part, bring him back when he is older and might be calmer. It felt like everyone was giving up on my son. Well I wasn't about to. I managed to get him into a special needs nursery, I spent hours a day at home doing play therapy and sensory therapy and my own made up speech therapy. I vowed to myself that I would give him the best chance he deserved. 

A few years later I fell pregnant unexpectedly. I gave birth and had another "ideal" baby. My first born, had started to talk, I was so proud of him! I was that busy concentrating on trying to teach my son to talk,feed himself, and show the professionals that my son didn't need people giving up on him, he just needed extra help, that I  hadn't noticed my second born wasn't developing properly, he was 16 months old. He hadn't so much as babbled, he spent his time spinning around or rolling toys under his fingers, wasn't responding to his name. I called the Health visitor who made a referral to the CDC, at 23 months old he was also diagnosed with autism. 

This time, I knew what I was dealing with, I knew how to help my child. I wasn't upset this time, because I knew that it wasn't the end of the world, that my child would develop if given the attention and support he needed. So I set off again, this time teaching both how to talk. 

By the time my second child was 30 months old, he and my eldest child were in speech therapy. My eldest child was blossoming, my second child wasn't developing as quickly. I didn't fret though, he had plenty of time to blossom too. All that mattered was that they were both happy. And they were. My eldest was happy in a unit for children with autism, my second child I found out had severe learning difficulties as well as autism, he was given a space at a special needs school. Not long after he started I found myself unexpectedly pregnant again! ( me and birth control didn't work!) This time it was a girl. I paid close attention to her development, I was expecting her to develop like my sons, but she wasn't, she developed neuro typically. Hit all her milestones. At 15 months old, she woke up one morning and literally stopped talking/babbling, stopped eye contact, and just generally regressed. I just knew from that day she had autism. At 27 months old it was confirmed. I was scared. I was in shock, because it wasn't expected.

I was scared because now I am a single parent to three children with autism, but, do you know what? I wouldn't have it any other way. My children are my world, they make me laugh, they fill my heart with so much love it feels like it will burst! Yes, I am exhausted at times, but it's a small price to pay to see my children happy and well cared for. The people who said my eldest may not ever talk, were wrong, he is nearly 12 and has the language of a 7/8 year old. My second child is nonverbal, my youngest is saying some words. I will never give up on my beautiful, sweet children. 

**If you want to share your story, please email me at  As always, join us daily at the GJOP FB page.  

Friday, April 22, 2016

Somewhere on the Spectrum. Written by Kimberly Miller

Somewhere on the Spectrum

I think I knew there was something different about my son from the moment he was born. It seems kind of odd to say that, but thinking back it’s true. My son was born via emergency c section after more than 30 hours of labor. My blood pressure was dropping and his heart rate was, so there was no more time to wait. When he was born I heard the tiniest little sound that sounded like a kitten mewing. It’s funny because I wasn’t sure at first if that was him or not, but it was. He was a quiet baby in the beginning. All snuggly. I remember I had him under the covers with me and the nurse came and jumped when she moved the blankets to take my blood pressure. He wasn’t making a sound. He was happy to be snuggled up with me. I remember the nurses telling me I was going to to spoil him or he was going to get his days and nights confused because I just let him sleep all the time and because I held him all the time.  When we got home he slept a lot, as newborns do. When he was awake he wanted to be held. I didn’t mind at all. Now that I know what I know, I should have savored those sleepy days a bit more. 

When he was 3 months old, we volunteered to babysit for my in laws, they were caring for a granddaughter whose mother had died as well as my mother in law’s brother with Down Syndrome. They didn’t get any alone time at all, ever. So my husband, both boys and I hung out at their house so they could go to some church event. We were driving back home in the middle of the night. The baby was snoozing away on the trip home. There was an accident on the freeway in front of us, so my husband stopped to check on the people and see if the police were needed. Though we were not involved in anyway and there had been no noise that was loud enough to startle him, the baby started crying. It was like someone had flipped a switch. I am sure it had nothing to do with the events of the day, but this is the way that it happened. From that day on my son slept very little. He cried when he was put down and he could stay awake until the wee hours. He would fight sleep at all costs. Sometimes I would get him to sleep and he wouldn’t be asleep for an hour before he would be screaming bloody murder, like he was in pain or scared. He was less than 6 months old. I asked the doctor about it. She said he was too young for night terrors and not to worry about it, he would outgrow it by two. 

He was walking by 9 months though he had just barely learned to sit up on his own (I remember he was older than 6 months because my other son sat unassisted for the first time at 6 months and my younger son did not, it was more like 7 months) and was barely crawling (around 5-6 months). It was like he had no time for crawling he needed to get moving already. My older son had pulled up on furniture and would walk as long as he had something to hold on to, but didn’t actually take his first steps alone until shortly after his first birthday. I was surprised when my baby took off before his first birthday. He did the babbling thing and everything seemed on track in that department. 

We visited my husband’s family often and they were always feeding him table food. I remember his grandparents giving him clam chowder at 4 months of age.  I was furious, but felt compelled to keep it to myself. They meant well after all. He never was one for meats, even baby food meat he refused. He would gnaw on a chicken leg, but always the bone end, so maybe it was more about teething than hunger. I remember he always put food in his drink and I remember my husband would fuss at him about it. I would tell him just let him do it. It’s his drink. He had to drink from an open cup. He didn’t like sippy cups and was always taking the lids off of them. 

The next obstacle was keeping him in or out of rooms. He was either trying to get out the front door or locking himself in a room. We got those bulb things you put on the doorknobs but he figured out how to bypass those in less than 3 days at 18 months old. The stove lock was a no go either. Though each was good for keeping the adults at bay, the kiddo could figure them out lickety split. It was about this time that I began to consider more seriously that he was different.  

He still didn’t sleep much but would be raring to go after just a few hours to recharge. I, on the other hand was exhausted. I couldn’t sit down for a minute because he was always into something. Still the doctor waved away my concerns. I remember around 3 I had snuck in the shower really fast when I thought he was sleeping. I got out and tried to go to my room to get dressed but it was locked. I was knocking and calling his name trying to get him to open the door, finally it dawned on me to check the front door. We had 5 locks on the front door by this time and he had managed to get them all open and was gone. I kicked in the bedroom door, got dressed and ran through the apartment complex screaming his name. By the time I got to the front (it was a small complex too!) he was coming back from down the street on his bike. I chunked his bike and drug him back to the apartment screaming and crying. I was at my wits end and I had no one to turn to other than his doctor who kept blowing me off. 

My husband and I had split up by this time and my older son was staying with my parents until I could get my life together. When he was 4, I was in the bedroom and I heard a crash from the kitchen. I went to inspect and my son was pinned between the sink and the stove he had somehow managed to pull over onto himself. I threw the stove off him. He wasn’t even hurt. He suffered no more than a small red mark on his back. He still talked in 2 and 3 word sentences at this age and often you couldn’t understand what he was saying. We would joke that he was speaking a foreign language. We started potty training around 2 or 21/2. He wasn’t fully potty trained until 6, just before school started.

On the first day of school, I  mentioned to the teacher, that I thought something was different about him, but she too blew me off. “He’s just a boy!” I cannot tell you how I hate this sentence. The notes from the teacher started coming home immediately and by the end of the school year the teacher had changed her tune. I think you were right was her new reply. I had gotten a new pediatrician. He was originally diagnosed with ADHD. The meds didn’t really seem to help. Finally she referred me. I started taking him to a place that offered psychiatric services and counseling. We went through so many meds trying to find what would work for him. They would help for a week or so then nothing. At the same time we were doing one on one therapy as well. The therapist recommended him for autism testing.

It’s funny how things work out. I had wanted to get him tested but the insurance wouldn’t cover it and paying for it  myself was not even an option. It would have taken me years to pay for it. The next time we went for therapy I think told the therapist that I had lost my job. She was like that’s great, now you can get him tested. Since I was unemployed he qualified for medicaid and that would pay for the testing. So there was the silver lining.

My son got his Autism diagnosis (Aspergers) in the summer of 2011 just before his 8th birthday. When I told his father his reply was,”Well are you happy now? You wanted something to be wrong with him!” My twin sister who also has a son on the spectrum (he is 7 months older) told me I was sick and should be ashamed of myself. There was nothing wrong with my son and I needed to see a doctor not him. Her reasoning? My son could ride a bike. “He’s too nimble to be autistic.” I was in this all alone, but that’s ok, because I felt alone my entire life.  

As I was filling out all of the forms for the testing facility and then again for the school who was still dragging their feet about testing him, I could see myself in each of those answers. I think I cried. The more I read the more I cried because it was like I was finally finding myself in finding answers for my son. Life had always been so hard for me. I couldn’t understand why. My whole life was chaotic and, now that I know better, the last place someone on the spectrum needed to be. I hid in my room and watched tv all the time. I was totally obsessed. I freaked out if I missed an episode. I remember that was the punishment my mom used. She took away the tv from me. My grandmother gave me a radio that played tv shows also. So when my mom would take away the tv I would lock myself in my room and listen to the show on the radio. When I went to camp for a week in 5th grade, I thought I was going to die without my shows for a whole week. 

On an everyday basis I counted everything and worried about everything. When I saw a book left on the bleachers, I would create an entire scenario in my head of what would happen to the student including what his excuse would be and what his teacher would say. I chewed the inside of my cheeks and my lips always had the imprint of my teeth on the inside of them. When I went to the grocery store I couldn’t step on the colored squares on the tile or the lines. At night I couldn’t go to sleep so I always made up stories in  my head. Every night I would pick up where I left off until I got bored or came up with something new to think about. 

To say I was clumsy is an understatement, my parents sometimes called me Grace. I would get so excited about Christmas I would shake all over even when I was 10. I would beg to go to my grandmother’s and cry the entire way there because I wanted to go back home. I was such a mess. 

I can’t remember having any friends until 6th grade. I knew kids in elementary school, but no one was really my friend. There were girls I liked, but mostly I didn’t fit in with them. I remember in 5th grade, as a reward, our 5th grade teacher let all of the girls with perfect attendance spend the night with her. There were no more than 5 us. The other girls were popular girls I cannot even remember them really talking to me. I remember we ate pizza and watched Excalibur. I had no idea who the people were in the movie and it was actually a bit scary for me. 

I had a voracious appetite for books though and carried one around with me every day. At 13 I began reading grown up books. I don’t mean like x rated or anything, but grown up topics. The stories were about fictional police officers, but still not appropriate for 13 year olds. Especially immature 13 year olds. I can say though that I did have two friends that I hung out with often from about 7th or 8th grade on. With all of the reading I have done and still do, I see why Aspergers is so easily missed in girls. We can definitely hide it better. It’s not as unusual for girls to be shy or read a lot and not be part of a group. Inside though things were a lot different. I didn’t fit in. I didn’t wear make up and do my hair. I wasn’t into clothes or shoes or trends. I wore a t-shirt and jeans all the time. By middle school, when I was finally allowed to grow it out, my hair was always in a pony tail. My friends and even my sisters always wanted to do make overs, but I could never get into all of that. I even carried a wallet because I couldn’t keep up with a purse and really saw no point in carrying one when I had nothing to put in it. I was picked on everyday of my life from the time I started school. I still get picked on now, but it’s mostly well intentioned people that aren’t specifically trying to be mean. 

When my husband left I started going to therapy because I just couldn’t get over it. I cried all of the time and I even ended up in the ER because I took too many pills. I wasn’t intentionally trying to kill myself, but I was trying to stop the pain and trying to sleep. I took Tylenol and Benadryl. The doctor said she did not think I was suicidal, but she did think I should talk to someone. Therapy helped to some degree. I was able to talk about a variety of things so that helped. She also helped me understand myself a bit more. She recommended a book called The Highly Sensitive Person. It explained a lot and that felt good. I felt less weird.

I have tried my best to give my children more than I had. I don’t mean material possessions. I mean more of my time more of my love and more understanding. I always felt out of place and like no one understood me. Life seemed to be so much more difficult for me. Everything hurt me so much more than others. I was always told I was too loud or too happy. I always felt criticized and like I wasn’t good enough. There were often times I would beg God to die or beg him to tell me what I did wrong and why he hated me so much. More than anything else I wanted my children not to experience the same. 

When I got my younger son’s diagnosis I was glad to finally have some answers, but I also felt a tremendous amount of guilt because I had already been through everything he was going through, so I passed this on to him. Had I known, I am not sure that I would have had kids. Life has been brutal for me and the thought that my child is going through the same hurts me deeply. For the most part is a happy kid, but school is hellacious. Kids are not nice a lot of time. I am hoping that when he is done with school and not having to deal with all of that he will be a lot happier. He is not as emotional as I am. I do comfort myself with the fact that he has someone that understands him and speaks up for him. Someone who fights for him. I didn’t have that. So if nothing else, at least I am more equipped I guess than some others are.

Kimberly with her son. 

**If you want to share your story, please email me at  As always, join us daily at the GJOP FB page.  

Friday, April 15, 2016

Somewhere on the Spectrum. Written by Kelly Kemp

Somewhere on the Spectrum
The First Day of the Rest of Our Lives
Hi. My name is Kelly. I am married to Dave and have two kids: H, who is 7,and Tink (not her real name, obviously, although in this day and age, who can tell?!) who just turned 3. Periodically, there’s also J, who is 17 and getting a life, so, sadly, we don’t see as much of him these days. Right, that’s the background done…
Yesterday our whole world was turned upside down.
Our beautiful, funny, loopy, clever, stroppy, clumsy, amazing daughter was diagnosed with autism. Autism Spectrum Disorder. She’s ‘on the spectrum ‘. Whichever way you put it, that’s it. A game-changer. For life.
Now, obviously, this wasn’t totally unexpected. Around 18 months ago we asked for a referral to speech therapy services as we were concerned at her lack of speech, and at the eventual appointment other ‘issues’ were raised that hadn’t even come onto our radar. When we received the report and ‘The’ A’ Word’ was mentioned, alarm bells started ringing! “No! She couldn’t possibly be! It’s just her speech, surely?” She was referred to a paediatrician…
When that appointment came round (these things do take time; you hear about it, but they really do), we spent half an hour in a tiny, unfamiliar room with a strange and rather cold person attempting to make our 2 year old play with baby toys, which, of course, she didn’t want to do. “Does she do things repeatedly?” we were asked. “No, not usually,” I reply, as Tink sits on my lap, taking squeaky eggs out of their egg box and putting them back in… Repeatedly.
That report came back in agreement with the speech therapist’s assessment that Tink did show some traits that may indicate autistic tendencies. Sigh.
So, this then led to another long wait for developmental assessment at our nearest Child Development Centre. This took place this spring and involved two mornings of assessment.
By now, I had removed my fingers from my ears, stopped ‘la la la-ing’ and had made tentative steps into reading up more on ASD. Also, as part of my work as a Preschool Manager, I had attended a level one autism awareness course, during which I sat blubbering as the realisation dawned that my daughter – my own daughter – just may be one of the children we were learning about. Rather embarrassing when sat amongst other childcare professionals on a course.
The assessments didn’t go too well – Tink was rather uncooperative, but I guess that was most likely just a trait of what we now know is her condition. They went to see her at her Preschool too, as they wanted to see how she interacts with other children and how she responds to requests from other adults, seeing as they didn’t get this information on the assessment days!
So this brought us (after another month of waiting) to yesterday. D-day. The day we find out if our precious little Tink is ‘just a bit behind’ and it’s something she’ll grow out of, or if it’s a lifelong condition we’ll have to get to know very well. After reading through the assessment report, it still wasn’t clear as to what the diagnosis was – we assumed they would tell us this in person, but we could take a wild guess. We waited nervously, Tink playing happily in the background with a nursery nurse from the centre, until, eventually, two official-looking people entered the room. Deep breath…
The paediatrician was very sensitive to our feelings and broke the news quite gently. After explaining the findings in the report, she stated, rather tentatively, that she was diagnosing Tink with Autism Spectrum Disorder. She looked a little surprised that we didn’t look surprised. In fact, although it’s a huge piece of news, it was a relief to finally know. For sure. To have ‘the diagnosis’ that we can use to get Tink some help and support throughout her life to make it better. Great, even. Of course, we know that this may not always be easy. People make the right noises about ‘early intervention’, but in reality, there is little funding available much of the time and it can be incredibly hard to access. But we have ‘the diagnosis’, so it’s a start.  
The paediatrician made a pretty sharp exit, leaving us with the teacher we had seen during the assessments. She was not quite so sensitive, and proceeded to bombard us with information, leaflets, talk of education health care plans and so on. We literally have a pile of booklets, leaflets and website addresses to work through. We were waved on our merry way with a “ring if you need us!” – and off we went. Out into the big, wide world with our beautiful, autistic daughter and a whole new world ahead of us. The first day of the rest of our lives… and it’s looking pretty scary right now. Wish us luck!

Join Kelly and Tink's adventures daily on her FB page It's a Tink Thing
 and her blog with the same name. 

Friday, April 8, 2016

Somewhere on the Spectrum. Written by Kerri

Somewhere on the Spectrum

My Journey…………

I had wanted to be a mother all of my life.  At age 41 after 6 miscarriages and exhausting all my medical insurance for fertility; I turned to legal risk adoption.  This basically means that you foster a child with the hope that parental rights will be terminated. I took classes; got approved and then the wait began.  I got several calls for babies that had shaken baby syndrome.  I would be a single parent so my biggest concern was for healthy child-nothing else.  I worried that I wouldn’t be able to handle the care those babies would need; so I declined.

The wait continued until I was 42 ½ years old.  One day I received a call that there was a baby boy for me.  My first question was if he was healthy.  He was.  His biological mother had killed his purported father while holding her then son.  The baby was then held hostage for six hours in an abandoned warehouse until the mother surrendered.  When you get these calls; you don’t have long to decide as the child needs a place to go. I was ecstatic at the chance and accepted. 

He was and is beautiful!  It was a long journey through the court process and also to try to determine his paternity.  As it turned out, the victim was not his biological father and the mother was not willing to provide alternatives.  This made it even more difficult to terminate parental rights.  When all was said and done; it was two years later and the adoption was finally completed.  I was his mom!

During the first two years of his life, while waiting for the adoption to be realized; I noticed some things.  I was sure the early trauma would affect him in some way.  I’m a social worker, after all, so that’s how I think.  He walked around fourteen months; but talking wasn’t happening.  Everyone told me that boys are late talkers.  It just didn’t feel right.  Call it mother’s intuition.  I had him evaluated for speech and OT and he qualified with more than a 25% delay.  He also bit kids a lot in daycare and had some pretty awesome tantrums.  Again, I had him evaluated. The day before the adoption hearing a diagnosis came in the mail:  PDD-NOS.

Some people actually have asked me why I still adopted him.  As if you would “give back” a child-your child that you have bonded with and love.  He is very verbal now and was by 24 months with the speech therapy.  As he grows we have new and different challenges.  Just as every child does at every stage in life.

I believe there are several things that can be gleaned from my story.  First, early intervention is everything!  If it wasn’t for EI; I don’t know at what level he would be functioning now.  It is a free service that is government mandated.  If you suspect something is delayed in your child’s development; please avail yourself of their services.  There is so much to gain and nothing to lose.

Second, autism can happen to anybody-whether you adopt or give birth. .  In my son’s case; there was no prenatal care-at all.  I think this may give some credence to the folic acid connection.  My son is still a healthy child; but he is different. Different is ok.  We have to adjust to it; both of us. He isn’t damaged, disposable or something to return.  He has certain strengths that are a part of his diagnosis.  He is also more than his diagnosis. He is a smart, charming, funny and affectionate person.

Friday, April 1, 2016

Somewhere on the Spectrum. Written by Susan Eyrich

Somewhere on the Spectrum

April is Autism Awareness Month. The month when we wear blue and attach puzzle pieces to everything we see. We will post statistics and demand acceptance. Autism awareness and acceptance is every day for us. It is a beautiful life to live.

I'm an Autistic adult. I've had a rough life but the beauty of my life has surpassed all the rough times. I wouldn't trade my life on the spectrum and I wouldn't trade the lives of my children. When I see people speak of a cure, I feel that my life and the lives of others are devalued. We are mothers, fathers, sisters, brothers, aunts and uncles. We are worthy of more than a political debate.

I'm a mother to 6 children. Each of my 6 children have taught me how to not just survive in this world but to truly live. My oldest son is almost 17 and is Autistic. There are many words to describe him but proud would be the word I choose. He is proud of having Autism. He finds strength in a diagnosis that most view as a weakness. My oldest daughter is 14 and she has Bipolar Disorder. I would describe her as protective. She protects her brothers and sister with a fierceness unknown to most. My next son is 10 and is Autistic. He is the most curious child you will ever meet and his empathy is amazing. He knows how I feel before I do. My next son is 8 and is Autistic. He is love redefined. He will embrace everyone he meets. My youngest daughter is 8 and Autistic. She is fierce and stubborn. She is a miniature me. My youngest son is 1. He's an adorable baby.

Some in the Autism community will ask why we chose to have children when we are genetically predisposed to Autism. The answer is pretty simple. All lives matter and every life is beautiful. My life, your life and your children's lives are worthy of love and acceptance.

In April I hope you spread awareness and acceptance. 

I hope you find connections in our large community. Most of all, I hope you see how beautiful Autistic lives are and you embrace them with open arms. Then I hope you take these things and spread them all year long. Teach your local communities that a community isn't a community when they exclude even one person.

We are worthy. We are beautiful. We are successful. We are determined. We are loving. We aren't inferior. We aren't diseased. We walk among you. We are Autistic. 

Susan's Family. 

Read more about Susan's family and her thoughts over on her Facebook page titled
  In Our World, We Are The Voice.  

*If you want to share your story, please email  As always, join us daily at our Grape Jelly on Pizza Facebook page.