Signs and Symptoms

 

"Something wasn't right!"

 

Even though all kids develop differently, there were signs we couldn't ignore when the boys were growing.

Birth to 1 Year:

  • At birth the boys did not make eye contact like other babies did.
  • They did not have any interest in feeding and had to be really worked on to eat, they wouldn't breast feed.
  • They gagged constantly while feeding, and threw up a lot!
  • They did not lift their heads or roll over until they were almost 6 months old.
  • They had no interest in toys, and their attention span was about 1 minute.
  • Connor was very frightened of loud noises, people coming to close to him and Zach was oblivious to noise, we thought he was deaf, as he always appeared not to hear us or loud noises around him.
  • They didn't sit up on their own until well into their 10th month, we would prop them up with pillows and they would fall over.
  • They didn't crawl until 9 months old, only very small amounts and would not be able to hold themselves up for long, real crawling began at about 11 months.
  • They didn't make any sensible or legible sounds until 1 year old. ( Ga ga, nana)
  • Started banging their heads on walls and hard objects, repeatedly at about 1 year old.
  • They constantly rocked on their hands and knees, back and forth for long periods of time, this seemed to calm them.
  • Constant Thrush, ear infections and colds, at least once a month.
  • Zach cried constantly, while Connor hardly made any noise at all.

    1 to 3 Years:

  • They didn't walk around furniture until 14 months.
  • Self abusive, biting, scratching, banging heads on the walls, floors, or anything hard.
  • Obsessed with water and not afraid of it at all!
  • Walked unassisted at 18 months, very shaky and fell a lot.
  • Were eating solid foods without gagging or vomiting constantly at age 2.
  • Started to chatter and concentrate a bit more at 18 months (da, ma, gaga).
  • Would hold sippy cups, utensils at about 2 years old.
  • Started to cuddle stuffed toys at 18 months.
  • Constant Thrush, runny nose, ear infections, colds at least once a month still.
  • Said Mama and Dada at 3 years old.
  • Got tubes in their ears that lasted over a year at age 3.
  • Started to gesture for things they wanted or needed, Connor more dominant, he would do this for him and Zach.
  • Had an MRI and CT Scan to assess damage done by head banging, thank God there was none!

    4 to 6 Years:

  • Said their first words at about 4 years old, one word at a time, sometimes use "me" in front of the word, "Me drink".
  • Started Pre-School after being assessed and diagnosed with a "Global Developmental Delay", of 1 1/2 years.
  • Started playing with some toys, playing a bit with other kids, talking more, always one to two words at a time, no sentences.
  • Got rid of their bottles and soothers at night for good at age 4. (Only for bedtime they used these).
  • Started to do large piece puzzles with help, and build with Duplo at age 4.
  • Started dressing themselves independently at age 4.
  • Helped with some household chores at age 4 with lots of help and hand over hand like, picking up toys, putting things in the garbage, putting things on the table, etc., became independent doing these things at about 4 1/2 years old.
  • Were diagnosed with Fragile X at age 4.
  • Started potty training at age 5 and they are now 6+ and almost trained fully during the day, still have accidents and use pull-ups at night, as they don't get up to use the washroom yet.
  • Using 3-4 sometimes 5 word sentences, in broken English, like "Give me drink, pease". Or "Go outside dinner over?"
  • Ask for things they want or help themselves without asking, and usually make a big mess! Especially pouring liquids!
  • Still have self abusive behaviors and behavior concerns, impulsivity, no consequence, hyperactivity, etc.
  • Have extremely soft teeth and have had a lot of dental work.
  • Still need reminders with putting shoes on the right feet, turning clothes the right way out, putting things on in the correct order, and wearing things the correct way (shirts not inside out, etc.)
  • Go to school on the bus, finally able to go to their seat and sit and behave, and are in a specialized Grade 1 setting in the Public School system.
  • Are learning sight words, alphabet, counting, pre- kindergarten skills, as well as some gr.1 skills, very slowly.
  • Getting to be more independent and like help prepare meals, sweep the floor, have phone conversations, etc.
  • Can watch a 1/2 hour of TV, pretty much all the way through without being fidgety.
  • Are extremely fussy eaters and like to stick to only what they like and will not try something new, unless you add it with a favorite food.

    7-10 Years

    The boys are still working and functioning at a 4-5 year old level. They have tantrums like children of this age group but can have the maturity sometimes of an older child. They are doing a lot more lifeskill training now and are very good at learning these types of skills. He loves to cook and spends alot of time in the kitchen with me doing so and creating his "sauces". He is toilet trained but has the very rare accident. He still needs alot of help with hygiene. Connor is really good on the computer and uses Boardmaker and Writing with Symbols to communicate his thoughts, days at school, what he wants. He has even memorized how to spell some words. He will ask you to write down what he wants to write or type or spell things and do this independently. He knows that money has values, though he is not sure of how much. He is doing well at school, and is learning. He is still a fussy eater, but is willing to try more now, thanks to his wonderful Teachers Assistants! Thank you Marcy and Shelly!!!!! These ladies are a real credit to the success he has built. Zach is doing well too, he is becoming a bit more independant. He is toilet training and still has some accidents at night. He needs alot of help with hygiene and grooming. He is also good on the computer and is slowly learning to use the programs Connor is mastering. Zach has alot of behavioral issues still but both boys seem to be calming down more now. He now likes to watch TV, DVD's and will sit through a full movie. We have to set limits on his TV watching as he will do it all day. He too, is doing very well with lifeskills training and loves to help in the kitchen making sandwiches, cooking dinner and doing laundry.

    Taizsia has always been higher functioning and is pretty much at her grade level in school for now. As school is getting harder, it is becoming increasingly more difficult for her. She can read, print, she absorbs things like a sponge but really struggles with math and any logical thinking tasks. She is in a behavioral modification class, kind of like boot camp and has to earn all her privileges, which works incredibly well for her! She loves school and has the occasional outburst of behavior, but for the most part is really good. At home, she is the instigator of aggression with the boys and often has alot of behavior issues and has to be redirected, put in time out or restrained until she is calm. She has also started puberty at a very young age and this adds to her difficulty. She loves to play with her dolls and dress up, talk on the phone. She enjoys cartoons but never sits for more than 5 minutes at a time!!! She is a very busy girl!!

    We are able to do a lot more with these guys now than we did when they were younger, like travel for longer periods, go to movies, concerts and yes, even some shopping!!!!

    We went through 4 different pediatricians before someone took us seriously and decided to test for the developmental delay. They are identical twins and all their lack of development and behavior concerns were put on the fact that they were twins and almost 6 weeks premature, only. All signs are not directly related to Fragile X that we know of, but a lot of the delays are, so if it helps someone out there to answer some questions or bring up the concerns to a doctor, I included all we saw and still see to the best of my memory. The developmental mile stones in "Normal" Age appropriateness can be found in a pamphlet from your doctor or at any health unit if you are not sure your child is progressing normally. It breaks development down by the month and year it should be happening. If you are concerned be consistent and persistent with your childs doctor, in reporting anything you feel is not right. Make sure you are heard and get the satisfaction and support you and your child need.

     

     

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