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Conversation with special needs son who is out of town

  • Son: How are dogs doing?
  • Me: They're awful! They're peeing on things and barking all the time. They're a mess!
  • Son: When I get home I have a talk with them.

god help me but I want a lot of money to spend on clothes

What is global developmental delay?

Children who struggle with various aspects of their learning and development are sometimes described as having “global developmental delay”.  What does this mean?

The term “global developmental delay” is used to describe a child who is behind other children of the same age in most or all areas of development. “Global” means that the child’s difficulties are across most areas of their development, including fine and gross motor skills, speech and language, social skills, learning and activities of daily living. “Developmental” means the delay begins in early childhood and affects the child’s progress though the expected stages. “Delay” means that the child develops skills at a later time than other children of the same age.

Delays with gross motor skills can include:

  • Being later to develop the skills of rolling, sitting and crawling as a baby
  • Being later to begin to walk

  • Lacking co-ordination with skills such as running, jumping and climbing

Delays with fine motor skills can include:

  • Being later to develop skills for craft type activities such as drawing and cutting
  • Being later to develop hand skills such as building with blocks and doing puzzles
  • Being later to develop pencil skills such as handwriting

Delays with speech and language skills can include:

  • Being later to begin to use words to communicate
  • Being later to combine words into sentences
  • Having more difficulty following instructions than others of the same age
  • Taking longer to learn new words and concepts
  • Taking longer to develop literacy skills
  • Using speech sounds, sentences and conversation which sound like a younger child

Delays with learning can include:

  • Taking longer to learn to understand concepts such as colours and counting
  • Being later to develop play skills such as pretending
  • Taking longer to learn and remember new information
  • Taking longer to learn reading, writing, spelling and maths skills

Delays with social skills can include:

  • Being  later to develop co-operative play with other children
  • Having difficulty maintaining friendships with children of the same age
  • Prefering to play with younger children
  • Taking longer to learn to share, take turns, negotiate and problem solve

Delays with activities of daily living can include:

  • Being later to learn to put on clothes, do up buttons, zips and laces
  • Being later to learn to use a spoon, knife, fork and cup
  • Being later to learn to brush hair and teeth independantly
  • Being later to develop toilet training

As all children are different, children suspected of having a global developmental delay require individual assessment and a carefully planned program to develop their skills.

Common questions

If I think my child has global developmental delay what do I do?  Child and youth health services are a good place to start. They can assess your child’s skills in relation to what is expected for their age and advise you what to do next.  A paediatrician or psychologist can provide a more detailed assessment of your child’s overall development. A paediatrician can also check for any medical issues that may be affecting your child’s development.  A specialised assessment with a speech pathologist for speech and language skills or an occupational therapist for fine motor and daily living skills is also important.  Your child should also have a hearing and vision assessment. Following assessment, therapy services can be provided to help your child develop the skills they need.

What kind of support does my child need?  Support needs vary from child to child so each child should be individually assessed to determine what is most important for them.  Many children benefit from speech pathology for communication skills and occupational therapy for fine motor and sensory issues. Providing a stimulating environment at home is also important as well as opportunities to interact with other children in a stimulating environment such as playgroup or kindergym.  Your child may also benefit from support at preschool and school and this is best discussed with staff before your child begins if possible.   

What causes global developmental delay?  Global developmental delay can be related to genetic disorders and it is more common in children who were premature or from a multiple birth, however often the cause is not known. An assessment from a paeditarician is recommended to check for any possible medical causes.

For more information about speech and language development and delays, assessment, therapy and ideas for helping your child check the Talking Matters Website.

Talking Matters Team

Talking matters helps kids with developmental delays

Query on behalf of my sister in law:

Is it common for autistic/delayed kiddos to have trouble with the whole “We pee in the potty, not on the floor” thing?

Exploring the 5 Learning Theories

jblearning.com

Last week  Micah told me that he learns best through pictures and observations. What I know for sure is that  the day to day settings of a traditional may are great for him socially, but independently he cannot process information like most children. I’ve spent the last week researching different learning theories and I thought I would share! It may be a great resource for you to work with your own child! 

Crystal Child;

This is the photo I had mentioned yesterday. This is my younger sister; at two years old she was diagnosed with a developmental delay, on the low functioning end of the autism spectrum and she is lovely.

It's Official! Now what?

After a long awaited appt at the UT Boling Center for Developmental Disabilities in Memphis on Monday, we got the diagnosis we have been both expecting and avoiding since It was first mentioned at Ethan’s 1 yr ped appt. yep…the day before his 3rd birthday my baby, my sunshine, was officially diagnosed w autism. Great birthday present, right?

I have fought this dx for a long time…not because I couldn’t handle it, or because I thought it would be this horrible thing, but because autism seems to be the ADHD of the 90’s…you know…hey your kid is kinda weird so lets label him ______. I wanted to be sure that there were no other explanations for his delays. After neurologists, swallow studies, evals by therapists, geneticists, othopedists, MRi, EEG, and multiple other appts…we had to finally accept the formal diagnosis. But what now? Seems there is soooo much nformation out there…alternative options, medications, therapies etc….guess now starts the lifelong process of sorting the chaff from the wheat and deciding what is right for my child and our family (I really need to do the same for my older son too though he is only here PT and is not as profoundly affected). Dr said we are basically doing all we can for him, so that was good to hear.

I think my approach will be to follow the advice in a blog I read today…if you want to know about autism…ask an autistic! Not that I won’t still research, but really I think that asking the affected themselves is the best way to truly understand.

“A person who has a diagnosis of developmental disability is just as fully a person and a citizen as is any one else. He or she has the same range of likes and dislikes and character traits as any other person. Everyone has some limitations. ”

L’arche Canada

How Our Fragile X Story Began

The best place to start our story is with two words. Developmental Delay. These two words put my family down a road we were not planning to be on. Our only child was not hitting important milestones so we sought answers to help us find out what was keeping him from progressing. Fortunately, we were blessed to have our son in a child development center that acted quickly to share their concerns so we could search for a medical reason for Sam’s delays. The answer we finally got after 6 months of actively searching was Fragile X Syndrome, something I had never heard of or knew was part of our genetic make-up. It had been traveling for several generations in the family as carriers without our knowledge because carriers don’t have any symptoms to warrant a genetic test. Approximately 1 in 130 women are carriers of Fragile X and female carriers have a 50% chance of having a child with Fragile X.

Unfortunately, families will carry this pre-mutated Fragile X gene for generations before it is realized, as in our case. Fragile X is also the only known genetic cause of Autism. Not all FX affected individuals have Autism but children with Autism should always be tested for Fragile X.

Developmental delay is usually the first sign that most parents see if their child has Fragile X Syndrome, and we were no exception. Sam needed more support than most his age to sit up, and he crawled a few months later than most. Although he tried to walk at one, he didn’t take his first steps on his own until 15 months. As mentioned earlier, Sam’s delays were mild when he was an infant but got more prominent when he became a toddler. For example, he had little expressive language and wasn’t imitating others regularly until he was 2. When child development professionals evaluated him, we got the formal confirmation he was delayed in gross and fine motor skills, cognition and speech. This led us to genetic testing for answers to the delays and before long, we had the diagnosis of Fragile X syndrome.

A roller coaster of feelings set in from confusion, panic, grief and guilt. After we accepted this new world, we started attending many Fragile X resource groups, clinics, research institutions and conferences across the US to access professionals who understand and study Fragile X.

We are encouraged by the breakthroughs science is uncovering about Fragile X, which in part is possible because of federal investments by the National Institutes of Health and Centers for Disease and Control. Donations to the National Fragile X Foundation are also helping to educate more people about Fragile X and provide resources to families living with Fragile X.  Please donate today at fragilex.org and take the time to learn about Fragile X.

 

Adventures in Sensory Processing!!!

There is so much information out there, I dont know where to start! But the labeling and diagnosing of an exact sensory issue is hard. I could say that Micah is hypo/hypersensitve, or stimulant-seeking/impulsive…  when it comes to his sensory processing issues.. THE first thing I asked myself when reading everything was WHATS WITH ALL THE LABELS?? I have a child with multiple sensory issues.. so instead of buring my face in 10 different books.. im going to go to OT tommorow with a open mind.. and willingness to work on a sensory diet that works for US!

 Micah is very feaful/cautions.. especially when routines change. He is very shy and new places, is anxious, and expresses many of his fears especially the dark. He absolutely dislikes loud noises and covers his ears on many occasions when he thinks its too loud..He cant work in loud spaces and is easily distracted by too much visual stimuli. Sometimes he can be very quiet and look as if he is not intrested in socializing in a group setting. He also struggles with motor skills, balance, and coordination. He has a hard time keeping things orginized and recognizing his spatial awareness. He does not like touching “dirty” things, getting dressed and taking showers or baths is a chore… unless someone helps him. When he needs stimulation he jumps all over things, throws himself around,and doesnt seem to recognize when he is in pain. He also has staring episodes similar to staring seizures.. which he has had since he was a baby… Absent seizures I mean.

Regardless of all Micahs Symptoms he is the sweetest, humbling, child I know!! I love him why because he has taught ME how to be kind, loving, and peaceful.. but most importantly he has taught me to be Patient!!  This journey into SPD isnt easy, but its learning about who I am as a person that helps me get through it! God HAS put so much into prespective for me in regards to resources, people places and things, in hopes to get through the tough times… I am thankful that I am finally getting answers to questions that I have always had! I am thankful that I have the time to take him to theraphies, testing, in hopes to get an answer! He deserves the best and I am going to do my best to make it happen… Micah has “SPD” BUT “SPD” doesnt have Micah!! Micah has the unlimited potential to be the best he can be! To be anything he wants as long as we work on putting our minds to it!!

WE CAN DO THIS!! WE CAN DO ALL THINGS THROUGH CHRIST THAT STRENGTHENS US” PHILLIPIANS 4:13

If there’s anyone out there in Tumblrland who has a child with severe ADHD, and has encountered a prescription medication or supplement that actually works (NOT Ritalin or Adderall), please hit up my ask box.  I’d love to talk to you.

Sweeter Assumptions

I’ve posted before on some of the not-so-sweet assumptions people make about foster care (yes, my ovaries are fine, and no, none of my kids are psychopaths), but I got the opportunity today to witness a good one.

It’s actually the perfect day for a nice story like this because (1) it’s election day, and politics is so ugly and costly and so few things ever change at all, and I would really like the world to be better, and here are all these people with the ability to make that happen and they’re more concerned about the sizes of their…budgets…and also, (2) I’m frustrated with how things are going with our current placement, but more on that next week.

So I’d like to post happy things before I go back to rewatching every episode of the Lizzie Bennet Diaries.

Today, Daniel and I had to drive baby Hera and toddler Aphrodite to the really good children’s hospital four hours away to do some follow-up appointments. On the way there, we stopped at a convenience store, and some strangers started talking to Aphrodite.

Now, Aph knows us as Daniel and Chazley, not mom and dad, but when one of the strange ladies talked to her about her mom, Aph understood that she was talking about me, and she hurried to catch up with me.

You should also know that Aph has some severe developmental delays. Also, she doesn’t like me (it’s partly because of her past experiences with women, and partly a strong personality clash, in that I want her to do things which she is determined not to do). But after two months with us, she didn’t hesitate to connect me with the idea of “mom.” A mom and dad make you clean your room, but they also make sure there’s food on the table and clean clothes to wear, and they take the cap off the toothpaste so you can brush your teeth a dozen times a day, if it makes you happy.

Why does this count as one of the sweeter assumptions? Because you’d never know, looking at Aph and me, that she wasn’t my kid or that she’s been through some serious horror-movie trauma. Of course strangers are going to assume that I’m her mom. In a good, safe, sane world, she would be with her mom. And it gave me a weird sense of hope (which happens more often, I think, when you’re desperate for a little hope) that the world isn’t as damaged as I think. Most kids grow up believing that everything is good and safe and sane, and that’s an easy-to-forget blessing when you’re in foster care.

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