Tag Archives: Nightmare

Question?: Pdd

Helen asks…

Anyone with a child that has a speech delay and/or PDD?

Was potty training more difficult for you? What worked?

My son is 3 and has both pdd and a speech delay and I am having a really hard time. I figure it is hard with a child that has normal communication skills, but he just doesn’t understand what I am getting at when I try to show him anything with the potty! Any suggestions?

Thanks in advance!

admin answers:

Yes I know where you are coming from. My eldest daughter is now 5 years old and she didn’t talk till she was nearly 3 years old. She was diagnosed at 2 yr old with Williams Syndrome. Like you tho, toilet training was a nightmare! Eventually we did get there but probably more thanks to her younger sister who is now 3. It took our now 5 year old 14 months to toilet train her but just during the day. She still isn’t night trained yet but that is for another time! She also just didn’t get it. Now that we have had her diagnosed with mild intellectual impairment, this has made things a little easier for us because we at least know what she is and isn’t capable of understanding to a degree but we still have our bad days that’s for sure. We just kept persisting with her, but it was frustrating. When we started to train our then 2 year old, we were preparing ourselves for a tough road of training but to our surprise and huge relief, our 2nd child only took 8 weeks to train for both wees and poos. A couple of months later she trained herself at night too so no more nappies or pull up for her thank god! Now that my eldest and 2nd child are both trained we are hoping that our youngest now 21 months will be just as quick as her 2nd sister. Really sweetie, it will take a lot of patience on your behalf. Get him to watch daddy too if possible. All children are different so what may work for one child with a speech delay may not work for another. Have you been in contact with your child’s speech therapist or an occupational therapist? They can definitely help though. But seriously, don’t be in a hurry sweetie, it will happen in time. My hubby and I also did a course called “The Hanan Program – It takes two to talk” which is designed for children with speech delays and within 10 weeks we were getting words and very short sentences from our daughter. It doesn’t work for all children but it will definitely help mum and dad and therefore may still assist the child. Ask your child’s doctor or therapist about it if you are able. Good luck sweetie and all the very best of wishes.

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Question?: Asperger Syndrome Diagnostic Scale

Daniel asks…

URGENT I would like some further information on Autistic spectrum disorders?

It’s for a friend-her child has 10 hour paddys-Is only good at school,but a nightmare everywhere else-She doesn’t understand what you tell her-She is repetative even if you aggree with her-even when she’s doing something fun she carries on-She uses a lot of baby talk-Hits her Mum,Steals and has told her Mum that she wants to kill herself-She thumps kicks and hits her Mum-Says she hates her Mum and has tried to push the baby’s pram over.
Her Mum has been everywhere for help and has been told that she’s not assertive enough-
Her Mum is assertive and has 2 other children that are fine.
It’s been suggested that it could be on the autistic spectrum but she doesn’t know what this is.
The Mum is having so much trouble getting help and has been trying for 5 years to get someone to listen.
You can’t reason with the child she expects everything to be done for her.My friend can’t even get dressed without her daughter wanting her to do something for her.
The little girl is 7
And is only good at school but bad for everyone else and steals from shops-My friend can’t cope anymore

admin answers:

The detection of learners with Autistic Spectrum Disorder (ASD), in their formative years is vital. As a teacher you are an important role player in this essential early detection.

Autistic Spectrum Disorder is not the result of bad parenting and these children do not choose to misbehave.

Autistic Spectrum Disorder is a complex and variable pervasive developmental disability, which stems from a multi-factorial origin and results in disordered brain development and function.

Estimates of prevalence vary greatly. Recent small scale, but intensive studies give higher numbers than earlier ones, this being due to the criteria for autistic disorders having been considerably widened over the years. The highest estimates for the whole spectrum, range from around 40 to around 90 per 10 000 births, but the true figures are still being investigated. ASD affects 4 times as many boys as girls. Of all the developmental disorders, ASD is the most researched and validated syndrome.

The onset of ASD is from birth or before the age of 3 years. Various subgroups are referred to within the autistic spectrum disorders. The ICD 10 system (International Classification of Diseases, 10th edition, World Health Organisation, 1992) and the DSM IV (Diagnostic and Statistical Manual, 4th edition, American Psychiatric Association, 1994) suggests some subgroups, the best known of which are “childhood autism / early infantile autism” and “Asperger Syndrome” There is a fair amount of academic argument concerning the criteria differentiating these subgroups. However, in clinical practice, the most helpful approach to diagnosis is to establish if the child concerned, has an autistic spectrum disorder and then to provide information concerning their present level of varying abilities. This type of detail is far more useful for identifying a person’s needs, rather than just putting him or her in a diagnostic subgroup.

As yet the exact causes of ASD are unknown, but intensive research is being implemented on an ongoing basis. With the appropriate intervention, learners on the Autistic Spectrum can be helped to improve their quality of life.

Although learners with ASD present with many different levels of severity and also display a wide range of individual characteristics, they are all affected by the “Triad of Impairments”. This triad is typically associated with a narrow, repetitive pattern of activities and resistance to change in things that directly affect the individual concerned and manifests with an impairment in the quality of development ( see Triad of Impairments)

In addition to this Triad of Impairments, you may well observe the following additional features:-

Little or no eye contact;

No real fear of dangers;

Abnormalities in the development of cognitive skills, e.g. Poor learning skills or resistance to normal teaching methods;

Abnormalities of posture and motor behaviour, e.g. Poor balance;

Poor gross and fine motor skills in some learners;

Odd responses to sensory input, e.g. Covering of ears;

Sense of touch, taste, sight, hearing and/or smell may be heightened or diminished;

Bizarre eating patterns – food fads;

High pain threshold;

Crying or laughing for no apparent reason;

Self-injurious behaviour, e.g. Head banging, scratching, biting;

Abnormal sleep patterns.

Children with ASD usually have accompanying learning difficulties. The range of intellectual abilities amongst children with ASD is vast. The presence of additional disorders such as epilepsy, sensory and intellectual impairments can co-exist with ASD.

Remember that ASD can vary widely and there is no single feature that, if not present, excludes the possibility of Autistic Spectrum Disorder.

Should you think that a child in your class may displaying Autistic Spectrum Disorder, we advise you to discuss this matter with his or her parent.-

For additional information, we have also listed varying International Organisations involved with Autistic Spectrum Disorder:

National Autistic Society – United Kingdom
393 City Road. London EC1V 1NE. England
Tel: 0944 20 7833 2299 Fax: 0944 20 7833 9666
E-mail:
Website: http://www.oneworld.org/autism_uk/

Autism Europe
Avenue E. Van Becelaere 26b. Bte 21. B-1170. Bruxelles. Belgique.
Tel: + 32 2 675 75 05 Fax: + 32 2 675 72 70.
E-mail: autisme.europe@arcadis.be
Website: http://www.autismeurope.arc.be

Autism Society of America
7910 Woodmont Avenue. Suite 650. BETHESDA. MD 20814. USA
Tel: 091 800 328 8476. Fax: 091 301 657 0869
Website: http://www.autism-society.org/

Autism Research Institute
4182 Adams Avenue. SAN DIEGO. CA 92116. USA
Tel: 091 619 281 7165. Fax: 091 619 563 6840.
Web site: http://www.autism.com/ari

Autism Society of North Carolina
This organisation has an extensive list of publications.
505 Oberlin Road, Suite 230. Raleigh. NC 27605-1345. USA.
Tel: 091 919 743 0204. Fax: 091 919 743 0208
Website. Http://www.autismsociety-nc.org

Guidelines for teaching a child with Autistic Spectrum Disorder

If you have a child in your class who has been diagnosed with ASD, there are certain guidelines that may assist you with that child’s individual educational plan.

Essential areas need to be addressed. The teaching methods should focus on the child’s strengths and compensate for their weaknesses. The strengths usually are visual skills and rote learning. The weaknesses are usually the ability to process language and the ability to provide their own structure and organisation.

The two most frequent causes of stress and behavioural difficulties are first lack of a simple, clear, understandable, predictable structure to each day and second, pressure to perform above the child’s level of ability.

Children and adults with ASD, whatever their level of ability, find it hard to comprehend time and space and how they fit into the world. Their impairment of imagination prevents them from building up an inner story about themselves. It is difficult for people who are not familiar with ASD to understand the nature of such problems. For example, some of the more disabled individuals become distressed if taken for a walk away from their familiar environment, because no-one realised the necessity of explaining to them that, at the end of the walk, they will be returning to the place they know.

One important way to help a person with ASD is to provide external structure to make up for the lack of a coherent inner world. They need to know where they are in time and space. They need to be given simple concrete guides to the world, such as picture timetables. They can manage change as long as it is not unexpected and they are carefully prepared in ways that they can understand.

The below list covers strategies that maybe beneficial when teaching a child with ASD:-

Avoid verbal overload, irrespective of the person’s apparent level of language ability;

Use visual cues and prompts;

Prepare the child for changes in routine;

Provide structure, using a visual schedule of daily activities, such as photos, pictograms, representational objects;

Give the child individualised instruction, do not rely on their comprehension of directions which are aimed at the class as a whole;

Minimise visual and auditory distractions;

Be aware that an increase in inappropriate behaviour may be an indicator of stress or frustration;

A child with ASD may take longer to learn new skills and you may feel you are not getting anywhere and that you are wasting your time. Do not give up, please be patient and persevere and you will be rewarded!

Toys and activities which maybe beneficial for the child with ASD.

Children with ASD seem to prefer toys that involve visual/spatial aspects, such as jigsaw puzzles, construction toys, shape and colour matching etc. Computer games may also be very beneficial to a child with ASD.

Children’s videos with a definite visual story, as opposed to reliance on the verbal aspect may be thoroughly enjoyed by children with ASD.

Physical activity is important for the child with ASD, but these activities must not rely on verbal input or the use of imagination. Physical activity has been found to diminish inappropriate behaviours and has the added benefit of improving motor co-ordination. Supervision of a child with ASD in the playground is essential, as the child with ASD often has no real sense of danger.

Recommended Publications:

Lorna Wing;The Autism Spectrum: A guide for Parents and Professionals (Highly recommended). Published by Constable, 1996.

Maureen Aarons and Tessa Gittens;The Handbook of Autism: A Guide for Parents and Professionals. Practical approach, providing easy reading and “digestible” information. Published by Routledge, 1992 (reprinted 1994).

Lorna Wing; Autistic Spectrum Disorders: An Aid to Diagnosis. Gives a good insight into the criteria for diagnosis of autism. Published by The UK National Autistic Society, 1993.

Paul Dickinson and Liz Hannah; It Can Get Better: A Guide For Parents and Carers. A light hearted, practical approach for dealing with common behaviour problems in children with autism. Published by The UK National Autistic Society.

Uta Frith; Autism: explaining the enigma. Published by Oxford: Blackwell, 1989

Maureen Aarons & Tessa Gittens; The autistic continuum: an assessment and intervention schedule for investigating the behaviours, skills and needs of children with autism or autistic spectrum difficulties. Published: Windsor: NFER-Nelson, 1992

Edited by Eric Schopler, Mary Van Bourgondien & Marie Bristol. Preschool issues in autism. Published: New York: Plenum, 1993

Edited by Eric Schopler & Gary Mesibov. Social behaviour in autism. Published: New York, Plenum, 1986

Stuart Powell and Rita Jordan (Eds). Autism and Learning: A Guide to Good Practise. Published: London: David Fulton Publishers Ltd. 1997

R/L Koegel, A. Rincover & A.L Egel. Educating and understanding autistic children. Published: San Diego: College Hill Press, 1982

Tony Attwood. Why does Chris do that? Published: London, NAS, 1993

Eric Schopler & Gary Mesibov. Communication problems in autism. NAS.

Tony Attwood. Asperger’s Syndrome. A Guide for Parents and Professionals. This book covers the topic of Asperger’s Syndrome. Published by Jessica Kingsley Publishers, 1998.

Lorna Wing; Asperger’s Syndrome: A Clinical Account.This book covers the topic of Asperger’s Syndrome from a more clinical viewpoint.Published by The Journal of Psychological Medicine, 1992.

Uta Frith; Autism and Asperger Syndrome. Published: Cambridge. CUP, 1991

Edited by Eric Schopler & Gary Mesibov. High Functioning individuals with autism. Published: New York. Plenum, 1992

A certain amount of material included in this brochure is chiefly taken from a paper written by Dr Lorna Wing, Consultant at the Centre for Social and Communication Disorders. It has been reproduced with the kind permission of Dr Lorna Wing and the National Autistic Society, United Kingdom, who published this paper in their quarterly magazine, “Communication”, edition Winter 1998.

References:

“Classification and diagnosis – looking at the complexities involved”-Dr Lorna Wing.
“Communication” Winter 1998;The National Autistic Society, England.
The autistic spectrum – a parent’s guide;The National Autistic Society, England.
Autism: Bibliography. A guide to books and videos;The National Autistic Society, England.
The Autism Spectrum. A guide for Parents and Professionals;Dr Lorna Wing.
Developing a Broad and Balanced Curriculum; Mrs Margaret M Golding. Autism The Way Forwards RSA. September 1998.
Autism: How to help your young child; Leicestershire County Council and Fosse Health Trust. ISBN 1 899280 65 0

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luck2tuck – hammer down

Act as if what you do makes a difference.  It does.  

~William James

I am only one, but I am one.  I cannot do everything, but I can do something.  And I will not let what I cannot do interfere with what I can do.  

~ Edward Everett Hale

Have you ever met someone and felt like you’d just been introduced to an old friend? I had the pleasure of meeting Jennifer yesterday .. and she’s beyond awesome. More to come on this, but if you’re not yet following her family’s story .. well, do. Luck2Tuck

~ Diary’s Facebook status, August 12th, 2012

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The Gowan family is living through a nightmare. But led by their son, Tucker, they are traveling the road with honestly, grace and humor — and an inner strength that they never knew they had. What follows is their story, as told by Jennifer.

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Tucker

It had been a beautiful day.  For the first time in a long time I felt actually excited and hopeful. We had just finished a 3 hour MAPS/Future Plans meeting at the high school for our son Tristan, a 10th grader with Aspergers. All of his teachers and family were in attendance. We had discussed at great lengths Tristan’s strengths and weaknesses, his goals in life, and what his hopes, fears and dreams were. All of this put into place to help Tristan plan for the future and help him to figure out what he wants to do after high school and beyond. It was the first time ever that I didn’t feel like the future was so scary for him. We had a plan. We had a team of people who loved and supported him.  The world was filled with possibilities. WE could do this…HE could do this. I felt elated.

However, during that meeting there was one thing that took me a bit off guard.  I still to this day have NO idea why Tristan even said it.   When we asked him about his fears, Tristan sat up straight, looked at all of us in the room and said, “My biggest fear in the world is that someone I love will get cancer.”

Now, blurting out doom and gloom comments wasn’t so unusual for my son. He tends to worry….A LOT. So I was used to this; but for some reason that particular comment made me shift a little more uneasily in my chair. After all, I had lost my mother to cancer. I certainly wasn’t going to tell Tristan that it couldn’t happen. I knew full well you could never make a promise like that to your child. Because, what if?  God forbid, what if? So instead I assured him  that although that is a very scary thought, I don’t want you to worry about things like that. I want you to enjoy life and be happy. Take each day as it comes. Stop and smell the roses. Tristan trusts my face more than my words, and if my face is smiling at him and sending him love and positive emotions, he will trust it.  He seemed content with my answer.

How little I realized that fear of Tristan’s was about to come true.

Tristan’s older brother Tucker, a junior in high school, was at the meeting as well and he was having a tough time hearing because of an ear infection he had from swimming. Just watching him struggle was driving me crazy in the meeting, so I decided to take him back to the doctors right after school to see if we could change the antibiotics he was on. Surprisingly, when our pediatrician checked his ear out she said that it was clearing up. It would just take some time for the fluid to go away. Knowing how crazed and busy we are and how hard it is to get him in for an appointment, my pediatrician asked him, “Well, since you’re here, got anything else bugging you?” Tucker mentioned his stomach had been hurting a bit, which we thought was from the antibiotics he was on. Upon further exam though, she found the area around his spleen to be tender. She thought it could be a case of mono, which is very common in 17 year olds. We needed to get some further testing, so she sent us to the ER because it was 5Pm on a Friday and all the offices were closing. It was sheer luck that we went. They drew his blood and we waited. An hour after arriving,  the ER doctor pulled me aside and delivered the most devastating blow of my life … My beautiful son had Leukemia.

The body has a way of going into shock to protect itself. I think mine went into overdrive that night. I tried to digest the words the doctor was saying to me, but I couldn’t. My mind was racing. I heard myself ask “Ok, that’s worst case scenario, what else could it be?” Her response was, “We are fairly certain it’s leukemia.” Then SHE burst into tears. I knew if the doctor was crying this couldn’t possibly be good. Think Jennifer, think. My mind was racing with a million thoughts. I needed to get him to a good hospital. How was I going to tell him this? How was I going to tell his brothers and sister this? Tristan is going to freak. He just got through telling a room full of people 3 hours earlier this was his biggest fear in life, and now it’s happening!? Is this a sick joke?! How could this be happening?!!!!  

I needed to talk to my husband. My body was shaking uncontrollably. The doctor asked me if I wanted a warm blanket. I told her I needed to sit down for a second. I thought I was going to pass out. My teeth were chattering as I spoke to her. She ran off to get me the blanket, and I sat down to call my husband. My hands were shaking so badly and all the heat had escaped from my body. I could barely dial my iPhone. All the while Tucker slept peacefully 10 feet away from me behind a curtain.

The second my husband answered and I heard his voice, the flood gates opened. I couldn’t even get the words out. He knew immediately something was wrong … seriously wrong. When I finally could form a sentence and tell him, he as calmly as possible said “We are going to get through this and we are going to figure this out.”  I told him how they wanted to send Tucker to a local children’s hospital by ambulance, but I thought we should take him to Boston Children’s Hospital, which was too far for an ambulance to go. He agreed; we needed to get him to Boston.

Me through the sobs, “But Truck, I don’t think I can drive him there. I can’t stop shaking, and I don’t know that I can keep it together in front of Tucker for the 2 hour drive.”  He said he was on his way. He couldn’t get there fast enough. I was going to crumble.

We agreed that he would drive him and I would go home to take care of the other 4 kids, pack up and meet him in Boston in the morning. How my husband made that drive that night is still beyond me.  At 1 am on March 24, 2012 Boston Children’s hospital confirmed the diagnosis of leukemia. I cried the entire night. I probably slept for an hour, if that. When I woke up, I was living a nightmare.

It’s amazing how strong a person can be when not faced with an option. Those first weeks after the diagnosis were a blur. We learned that Tucker had the rarer form of leukemia called AML, and that to treat it he would have to be in the hospital for at least 5-6 months. He wouldn’t be allowed to leave because the treatment would bring his Absolute Neutrophil Count ( the thing you need to fight infection) down to zero. The germs of the outside world could kill him.

5-6 months?!  How were we ever going to do this with 4 other children at home 2 hours away from the hospital?  The whole thing seemed daunting. But, one thing I have learned in my life, especially having a child with Aspergers, is to take things one day at a time, one minute at a time if you have to.  Whatever you need to do to get through.  This was no different, except on a much more frightening level.

Jennifer with Tucker and little sis Aisling

Both my husband and I were trying so hard to be strong for Tucker and the other kids. There were many moments, especially in those first few days, that I thought I can’t do this, but then the reality of my situation would hit me and I realized I didn’t have a choice; I had to do this.  I HAD to be strong. If it wasn’t for the support of our community and our friends and family, I don’t know how we would have made it through that initial phase. They picked up the slack where we couldn’t. I was so worried about  Tucker, but I was also so worried about the other kids, especially Tristan. For the first time in my life I had to relinquish all control when it came to them. Tucker needed me in the hospital with him.

We muddled through each day, and slowly but surely I watched all 5 of my children rise to the occasion. My heart soared with pride for all of them. I always knew how resilient children could be, but I was now seeing it with my own two eyes, and on such a grand scale. They were all willing to go with the flow, even Tristan. Whatever it took to cure Tucker, they were ALL on board for it.

Tucker has been at Boston Children’s Hospital now for 5 months. To say it has been a roller coaster ride would be an understatement.  But, the doctors and nurses have been amazing, and I am SO happy to report that he is in remission!!!  He has one more very looooong round of chemotherapy left, then he will finally be heading home.

Ainsley, Lochian, Finnian and Tristan waiting to welcome their brother home

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Follow the Gowan’s journey HERE

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YOU CAN HELP.

If you are in the Boston area, PLEASE donate platelets and blood. Check out: www.halfpints.childrenshospital.org for details and make an appointment to donate to Tucker or any of the other children fighting cancer at Boston Children’s Hospital.

If you are not in the Boston area, please inquire at your local hospital about their donation programs. Children and adults fighting cancer need countless blood and platelet transfusions as they go through chemotherapy.

Consider being a bone marrow donor. Click HERE to find out how. A thirty-second cheek swab puts you in the database, where, if you are matched with someone in need, you can literally save a life.

Donate directly to the Gowan family at Luck2Tuck, c/o Webster Bank, 100 Main St. North, Southbury, CT 06488

View the original article here

Three Elementary Schools Is…A Lot.

This summer has been quite a time for me. Every week there has been something big going on—house guests, travel, personal revelations, intensive napping. It has all made the past couple of months with my kids home for the summer pass really quickly. School starts Monday for us and I can’t quite believe it.

I’ve had some low-level worry all summer about this year’s school situation, because Jack is moving to a brand new school and I fear the unknown. He’s worried too. He’s worried that the work is going to be too hard. I think that last year threw him because he had such a tough time. Interestingly, even though he had a tough time every day in class and his grades fell, he rocked the hell out of the state standardized tests. I know he can do the work. He just has to be able to relax and access that part of himself.

This is why I’m really hoping that when he sees how different this class is, he can settle in and have fun with school. Or at least not be miserable. I want him to really understand that there are only six kids and they are all autistic like him and his teacher will have enough time to really give him attention. I think that will help. He does so well in that type of environment.

Other than that, I have been kind of in denial about the logistics. Getting everyone to school last year was a complete nightmare. This year, buses have fallen into place, which means that all my kids will be on well-timed buses to and from school except Sam in the morning. I cannot tell you what a relief this is. Now if only I could get my kids to eat school lunch, my life would be complete.

The other thing that is stressing me out about this school year is that I’m not quite sure how to fit the activities, meetings, and class events for all three of my kids into one little schedule. I’m already concerned about Halloween. I mean, Alex and I can’t even divide and conquer, because there are more schools than there are us.

My first challenge of the year was open house on Friday. The great thing about open houses, where kids get to meet their teachers, is that schools decide that it’s a good idea to stuff every single family into the school in two hours. Or less. It’s chaotic. Add in travel time and parking at three different schools and you have a recipe for flop sweat.

Especially if this is your schedule:

Bad things happened to the schedule over the course of the day.
Also, fuck you, Jack’s school. 45 MINUTES?! Can you imagine if you had more than one student there? Also, not really. I’m sorry, Jack’s school. Please, don’t hate me. I’m paranoid now. DID I MENTION THAT I FEAR THE UNKNOWN?!

We headed out at 1 o’clock to find out who Quinn’s teacher is. The problem is that about 15 minutes before we left the house, Jack started to freak out. He told me his eyes hurt. All he seemed to want to do was lay down and cry. He felt warm and feverish.

The problem is that we had to go. We had to go. Quinn needed to be given the chance to find out who his teacher is and have a chance to see his classroom. Sam was really looking forward to going back to his school. I hadn’t had a chance to meet Jack’s teacher at all yet. We HAD to go.

My poor baby Jack. I gave him some Tylenol and put everyone in the car. We were a block away from the house when Jack threw it up.

I didn’t even stop the car.

I’m a terrible fucking person. But I didn’t know what to do.

We got to the Q-ball’s school and found out who his (awesome) teacher is. She is the same teacher Sam had in second grade and I feel very lucky that Quinn gets to have her too. We waited until 1:30 when we could go meet her and check out the classroom. Sam and Quinn were energetic.


We finally got up to Quinn’s classroom and Quinn settled in at the back of the class to draw on a whiteboard. I hope the teacher appreciated the last time Quinn will ever be quiet in her class. Quinn is a very different child than Sam. It will be fun to see the teacher realize that. Quinn is also a child looking for the right hair conditioner.
Algernon also went to the open houses. He is a mouse looking for the right soap.
The whole time we were in Quinn’s classroom, I had my eye on the clock. We had to be out of the school by 2:15 at the latest if we had any chance of staying on schedule. Furthermore, we had to stop by to say hello to our other favorite second grade teacher as well as Jack’s teacher from last year. It was a tightly packed schedule.

As we were walking to the car, Sam asked if we could stop and get food because he was hungry. I was all, “THERE IS NO TIME!” Then I threw an almost empty bag of Goldfish crackers at him when we finally got in the car—and four minutes ahead of schedule, I might add.

(Did I mention that I am a fucking terrible person? And mother? Because evidently I am.)

We got to Jack’s school just after 2:30 and snagged the second-to-last not entirely illegal parking space on the block. Then I started dragging my kids up this long hill and Jack started looking more and more ill because it was hot and humid and I tried to give him the ice pack I still had in my bag, but it was tepid and full of water by this time and he totally didn’t fall for it.

But! And yay! I met my new best-friend-at-Jack’s-school on the way in. She was all, Hi! And, I recognize your kids! And her husband told Sam about the vast conspiracy that we parents have to make kids’ lives as miserable as possible, which is SUPPOSED TO BE A SECRET, SIR, but that’s okay because we already have a friend at Jack’s school!

(Said new best friend might be slowly backing away from her computer right now.)

Then we were left behind because at some point Jack sat down on the sidewalk and refused to go any farther and I was only able to get him to stand up by suggesting that maybe his teacher might have some water he could have. Honestly, at this point, I was just hoping that he wouldn’t puke in his new classroom. You know, BEFORE the first day.

We finally got to his classroom and met the teacher and the two paraeducators that work in this classroom of six kids. I know. I make an involuntary happy sighing noise every time I hear that too. Everyone was really nice and Jack seemed really happy there. He immediately found the quiet sensory corner and camped out there for the next 20 minutes.


Jack is going to be mainstreamed for part of the day, so I wanted to take him to meet the teacher who will be teaching him during those times, so we walked up a staircase to find her. Jack found a rocking chair in that room and parked there.

Then Quinn sat on his lap and Jack choked him in retaliation, which is out of character for him, and I was all disheveled and sweaty and the paraeducator was standing right there probably silently judging us and I kinda didn’t know what to do, so I just continued to stand there.

I ROCKED as a parent today; have I mentioned that?

I haven’t mentioned yet that this tiny 45-minute window also included a popsicle party in the school courtyard, where “party” really means “line to get a popsicle,” but Quinn and Sam were STOKED about it, so the paraeducator took us there. We walked down two flights of stairs, through this crazy maze-y space and finally found a door to the outside. I felt as if I should have left a trail of bed crumbs so we could get back out. This school is HUGE.

We got about five feet out the door into the hot, crowded courtyard, which stretched up a hill past a loud piece of machinery—I’m guessing air conditioner. And Jack stopped. And said, “I want to go inside.”

I was fine with that, but Sam and Quinn were already out of reasonable shouting range. I asked Jack if he could sit on the grass while I went and told the others that we were going back inside the doors and he shook his head no and said, “I can’t.”

I decided Jack needed me more than the other two, so I took him inside, found him a corner, sat him on the floor, and made him promise not to move while I went to tell his brothers where we would be. He agreed, so I went back outside. Sam and Quinn had stopped at the top of a short hill and were waiting patiently. Sometimes the two of them are crazy and impulsive and not as mannerly as I want them to be, but there are times where they really step up and do what I need them to do. I was really proud of them.

On the way out, I had to stop and take a photo of a member of our party on the red carpet that the school had laid out. It was a nice touch.

 Algernon appreciated the glamour.
Then we went back out to the car and at 3:23 we were on our way to Sam’s school, which was fortunately only five minutes away.

Things went smoothly there. Sam is in the highly gifted program at this school, where there is only one fourth and one fifth grade class for that program. So Sam knew who his teacher would be and also that all his classmates would be moving on with him. This made open house very easy and happy.

Algernon even managed to get a little bit of work done while we were there.

Awesomely, Jack was the one who posed him.
And while Sam was reconnecting with some of his buddies, Jack proposed to me. He doesn’t look ill at all, does he? *headdesk*
The ring was some sort of bolt or fastener of some kind. I started to frantically look around in hopes that I would catch whatever expensive electronic equipment that he’d taken that off of before it smashed into a million pieces on the ground. Turns out he’d just found it on a desk and he was happy enough to return it. But the sentiment was nice.

Sam had an issue he had to discuss with his safety patrol teacher. It was kind of complex and based on fears and anxiety and leadership and he was able to talk to her about it like a real-life, grown-up person. It was impressive. Especially considering he had to do it with Quinn ping ponging off of him into the wall and back.

After that, we headed downstairs (I dragged a lot of kids up and down a lot of stairs today, people) to say hi to Sam’s teacher from last year.

There, Jack and Quinn found their own makeshift sensory area.
We returned to our car at 3:58. I can’t believe we did it. I immediately took my kids to buy them ice cream. They were awesome at those schools. I was really proud of them. I was also exhausted. Because I am not the type of person to keep my problems to myself, I sought sympathy from Alex.
What I really love about this exchange is that he wasn’t even fazed by the barfing. He just accepted it and moved on. He didn’t even need details.

Welcome to Team Stimey.

Now that open house is over, I’m really looking forward to Monday. Although if Jack (or any of my other children) is sick on Monday, I will probably cry. Because although I will force a sick child to go to three open houses, I won’t make him go to school.

Let the countdown to time alone begin!

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A Diagnosis of Autism: Making Adjustments to Manage Feelings of Loss and Grief

Having a child with a disability is every parent’s nightmare. Once you have heard the words, “Your child has Autism.” the disappointment, anger and the feeling of isolation can leave you in shock. How long you remain there will be determined by how well you deal with your emotions.

Disappointment, anger and self-pity are natural feelings to have when you first receive a diagnosis of Autism. Giving yourself permission to experience these emotions and then letting them go as best as you can will help you focus all your energy on becoming the best person for the job that has been assigned to you.

GRIEF is a powerful emotion and is the most common hurdle that keeps many parents from moving forward. It is extremely important to allow your self to go through and experience the stages of grief, which include denial, anger, bargaining and finally acceptance. Dealing with these emotions in a healthy manner will transform you into a most effective advocate – one that will see the way clearly to maximize your child’s greatest potential.

Some parents do not like to use the words loss or grief as it relates to Autism because it implies grieving your child. This grieving process is not about mourning your child but more about grieving the loss of a future you had HOPED for.

You HAVE experienced a loss, a LOSS of the dream you had for yourself, your child and your family – a disappointment about an idealized future. This means that…

certain adjustments need to be made to the vision you held for your child and family. As with any loss, parents of children diagnosed with Autism need to find a way to make peace with the diagnosis in order to move forward.

Just remember the dream you have for your family’s future can still be positive, it is just going to be different. In spite of the new category the medical profession has placed your child into, the destination can still be the same but the journey to get there is going to take a unique path.

Important things to keep in mind:

1) You have to get past the hurt, disappointment, anger, and distress. Too much negative energy will only drain you and make you less available to your child.

2) Dealing with these emotions is not only OK; it’s mandatory. If you really want to help your child, this can do more for your child than any treatment out there.

3) Keep in mind that this is a process you have to keep working at. You may feel as if you have resolved your grief but there will be days when it returns. Expect it, have a plan to deal with it so you can keep putting one foot in front of the other.

If you can’t seem to move forward and days like this turn into weeks, you may be experiencing another emotional block. The best way to shorten its course is to find someone that will listen and help you process your feelings in a non-judgmental way.

This is when you have to call on someone from your support team! This could be a trusted friend – a supportive objective someone – or a professional such as a parent coach or a therapist.

Remember, this diagnosis does not change your child; but it does change how you need to work with your child. Don’t waste your time and energy being angry with yourself or the doctors, it does your child no good to linger in a negative state. Forget the what-ifs – look ahead, make the necessary adjustments and set the bar high for everyone, including your child.

The most important thing I tell parents is “Don’t focus on the label – focus on finding the best way to connect with the wonderfully unique child you have before you.” This new label may help you acquire insurance to cover therapies but it can also keep you focused on the negative so pay little attention to it. Instead focus your energy on connecting to your child’s world with thoughtful intention because it will open the door for her to enter into your world, the one she has to find her way to live in.

Every child has challenges and the challenges your child is faced with just happens to have a particular name called ‘Autism’ or ‘PDD-NOS’ or ‘Aspergers’ or ‘ASD’ or…. Don’t let a ‘name’ cover up the amazing potential that lies within your child.

It may help to remember that your child isn’t any different now then he was when you didn’t know he had autism. You know he’s the same child you’ve loved since birth. So I urge you to focus on uncovering his abilities, not treating his disabilities, in order to change possibilities!

Connie Hammer, MSW, parent educator, consultant and coach, guides parents of young children recently diagnosed with an autism spectrum disorder to uncover abilities and change possibilities. Visit her website http://www.parentcoachingforautism.com/ to get your FREE resources – a parenting e-course, Parenting a Child with Autism – 3 Secrets to Thrive and a weekly parenting tip newsletter, The Spectrum.

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Autism: New Teacher, New Life – How The Teacher Saved My Family From Destruction

Top Tip: With the right support network, things can change. This story is dedicated to a teacher who (like a set of braces) gave us our smiles back.

I am a father of a son Charlie, Charlie is now aged 11 and has Autism Spectrum Disorder. Charlie had moved from a mainstream class to an Autism Spectrum Disorder special needs unit, in a different school. It was felt that Charlie, while coping well in the mainstream environment would soon start to fall way behind. With the Characteristics of Autism becoming more noticeable; he started getting more frustrated and agitated in class. So, after loads of bustling with the Department of Education and some politicians, we eventually got Charlie into the special needs Autistic unit. He was to start in September at the age of seven. His new class was to have six new children, all different ages and all of different abilities. Charlie was to be the eldest and would be, by far the most vocal. So, after the summer holidays Charlie started in his new school; we were very apprehensive. Charlie started on a Thursday, two days ahead of everyone else, he absolutely loved it. He got to play on the PC on his own, he basically had free reign.

On the Monday after Charlie’s first real full day we went to collect him. Charlie’s teacher met us at the school door an explained that Charlie “had had an incident,” he went to kick a Special Needs Assistant. This was quite out of character for Charlie and we found ourselves in a situation where we actually had no answers, it was new territory for us. Over the next few months Charlie’s behaviour went downhill, we were called to the school regularly and our lives turned into hell. Charlie had become a hot tempered unreasonable child, he was not happy in school and he threw tables, hit adults and caused havoc in the class, it was just a nightmare. Jane hadn’t wanted to send Charlie to the new school and she was being proved right, our relationship was straining, life was not good even poor Chris (Charlie’s brother) was finding life tough. We were living life day to day, expecting a call from the Principal at anytime, making ourselves available to collect Charlie at the drop of a hat. We arranged meetings with the school Principal and the behavioural specialist. Jane had an argument with the Principal because she felt the Principal was being unreasonable (both Jane and the Principal are tough cookies), we were called to the school by the Principal three times to bring Charlie home because they couldn’t handle him. By Christmas we were totally and utterly stressed and by the summer we were pulling our hair out, so much so that we were thinking of moving Charlie to a Higher Dependency Autism Unit. The children in this unit would have far greater educational needs than Charlie, however, they wouldn’t have as bad a temper. My biggest problem with Charlie’s change of character was, that Jane and I could only control his home environment and we felt helpless when it came to his schooling issues, however home life had also dramatically worsened.

In June we received a letter home from the school to say the current teacher (who had twenty five years experience teaching children with Autism Spectrum Disorder) was retiring. Jane and I embraced this as we felt maybe a change in teacher might bring a fresh set of eyes to a difficult situation. I met with the new teacher (Mrs. Hannon) for a few brief minutes, she ran through her qualifications and explained to me about what she hoped to be able to achieve with Charlie. I explained where we were at the start of last year versus where we are now, and how traumatic the last year had been, both for us and Charlie. Mrs. Hannon said she has dealt with far worse than Charlie and she would expect him to reach the goals and targets that she sets out for him. I left the meeting delighted, at last we would have the support structure that Charlie needed and Mrs. Hannon seemed to know her stuff, she was like a breath of fresh air.

September arrived, I have to say Jane and I really weren’t looking forward to Charlie going to school again. “What if he starts on Mrs. Hannon,” Jane said “I don’t know, let’s just wait and see,” I answered. For the first few months Mrs. Hannon had to get to know Charlie, his moods, his tantrums and his likes and dislikes. She had some difficult issues, one that sticks in my mind was where Charlie had been so violent that the whole class had to be moved to another room, however, things were changing and the teacher was getting a handle on the situation. By December of the first year with Mrs. Hannon, Charlie’s tantrums had drastically reduced. By the summer he was only having tantrums a few times a month. Mrs. Hannon had set the boundaries and Charlie knew not to cross them, because he would receive dire consequences. Jane and I were delighted with the new teacher; we showed our appreciation by doing exactly as we were asked, and also being proactive with Charlie’s educational and social needs. By September of the following year Mrs. Hannon suggested that Charlie be included in the mainstream class for two hours a day. This was a dream come true we had at last got our son back. There were a few sticky incidents with Charlie going to the mainstream environment but in general he did well and if he had an issue he was brought back down to the Autistic Special Needs Unit.

By the following September (which is this year) we were asked by Mrs. Hannon to allow Charlie to spend most of his time with the fifth class boys, and only go to the Autism Special Needs Unit for Math and English. Again we were ecstatic, Charlie has surpassed himself, he hasn’t had one incident yet, our fingers and toes are crossed, we are hoping he keeps up the good work. We think he has turned a corner in his life. It seems as if Charlie’s thought process has changed, he now thinks he is in a mainstream environment needing remedial help rather than being in a remedial environment needing mainstream help. We know from the past that things can go wrong at the blink of an eye but it does seem at this stage that Charlie will continue on this path to improvement.

If it is not obvious from this story, my family owe our entire happiness to Mrs. Hannon and her team, which include beech park services. Mrs. Hannon is without a doubt an unsung hero, it is people like her that make life worth living; she always has the child’s interest at heart. Just seeing how dedicated she is, and how exhausted she looks at 14:30 hrs on a Friday evening, after putting all her strategies in place, is moving. We have been given our son again, the son that laugh’s in the morning at seven o’clock, and laugh’s when he goes to bed, the son that doesn’t hurt daddy anymore and doesn’t curse at his brother. The son that tells his mammy he loves her and she is the best in the world, the son that says he will tell his teacher if daddy gets angry and the son that picks up acorns for the fifth class nature table. We owe a great deal to Mrs. Hannon and maybe this story can be a small repayment for the immense work she has put in.

My Name is Peter Devlin, my website is AutismInIreland, Here is the URL http://www.autisminireland.com/. I have an 11 year son Charlie, he has Autism. I am now an expert on Autism. The journey has been tough, extremely tough. I have decided to write a series of short stories about how I managed to beat Autism and sometimes how Autism managed to beat me. Have a look at Charlie’s pictures they are amazing. Send me your stories, and lets educate together. My website has a multitude of stories and helpful hints about Characteristics of autism and traits pertaining to Autism Spectrum Disorder.

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Shopping With an Autistic Child

Shopping is an essential part of our every day lives, we need to shop. However even a normal task like shopping can become a nightmare for an autistic child.

 

Autistic children have difficulties processing the different sensations we all experience in the environment on a daily basis. This is mainly because children on the spectrum can either be hyposensitive (under sensitive) to sensory input in the environment, or hypersensitive (over sensitive) to sensory input in the environment.

 

Autistic children may have difficulties blocking out what other people may be able to ignore as background noise, for example a low drone of chatter, the ring of a till, an escalator, the noise of a shopping trolley, the list goes on, all meaningless noises we can filter out and ignore.

 

For an autistic child these noises are all equal, they can not shut them off and ignore them in the same way we do. They will be aware of each noise, and added to these noises will be the sudden noise; for example an announcement over the tannoy, or a child scream out someone dropping something, again the list goes on.

 

There are not only the noises to consider when shopping with your autistic child. There are also smells; all smells we again ignore, some ones perfume the odour from different foods, like fish or meat a perfume counter. You may find that certain areas of the shop can cause the child to become upset and it could be a certain scent is causing distress. They may find it difficult to distinguish between different smells and be overwhelmed.

 

The fluorescent lights in the shop may hurt their eyes, there may be a lot of differing displays, light settings, and the whole visual effect of the shop may be confusing to them.

 

Sometimes autistic children can be affected by the feel or touch of different fabrics, trying on new clothes or shoes can sometimes cause pain and distress, coupled with the noise and light sensations this whole experience can cause an autistic child a lot of upset.

 

So how as a parent can you help your autistic child cope with these things? One suggestion is the introduction of social stories.

 

Social stories can be used as a tool for helping your autistic child understand and deal with all these sensations. Helping them to understand what is going on in the shop, what they can expect and what others will be expecting of them.

A good social story can help you turn what potentially can be a nightmare shopping trip into a bearable experience.

 

Autism social stories to help with shopping trips as well as other activities can be downloaded at www.autismsocialstories.com

My name is Janine and I am an autistic adviser, I have been writing social skill stories now for over five years to help parents, carers and teachers cope with managing autistic behaviors.
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