Pages

Monday, February 27, 2012

Tips for children and babies who have special needs


Helpful tips for babies and children with Fetal alcohol syndrome

Sleep problems: Try a quiet, dark room I like to rock babies to sleep however Christopher wanted none of that.  A nice warm bath and lotion after can help relax them. Avoid  sensory stimulation before trying to get them to sleep like watching cartoons on TV.
FAS babies and children usually do not sleep as much as other babies. My husband would sit at night with our youngest, Christopher on his chest as he watched TV while I got some sleep. My six year old Stephen and my four  year old Christopher,  sleep better with music or nature sounds on in his room as well. 
Tyler is over stimulated by the same sounds so it doesn't work for him 
 All three of our boys still wake up through the night.  I have tired lavender soap and lotion, teas to relax them, there are only a couple of things  we have used that have helped, Melatonin and Clonidine. We do have a bedtime routine to help them calm down also. Usually a story, snack, rocking and bedtime prayers. 



Christopher in his favorite place to sleep

Eating problems: With an infant, try using a preemie nipple, with my son I changed to Nuk and that helped him. It sometimes takes them much longer to eat than other babies the sucking reflex isn't always as strong. You can gently stroke their cheeks to help encourage  sucking. Expect feedings to take longer and you might try feeding them less and more often.  
We found out at the age of 2 when we were still dealing with major eating problem with Christopher that his tonsils and adenoids were very large they were removed when he was almost 3. This greatly interfered with his eating, it has improved, however he does still have problems eating. We offer a reward for what we call a “happy plate” which means he ate all of his food. We give him small portions so he is able to achieve his goal and get the reward usually a small piece of candy, he can always have more food if he wants it. We also still at the age of 4 find ourselves feeding him about half way through the meal. He can use a fork and spoon but once he has enough in his stomach so that he doesn't feel hungry he wants to be up and running. We do time out now that he is 4 when he gets up from the table he understands he has to sit if he is going to be in the dinning room while we are eating. He is allowed to go up to his room and play if he doesn't want to eat. Meal times are very hectic in our home still but we are slowly getting there. While we struggle to get Christopher to eat. Tyler doesn't know when to stop eating and will eat very fast he has gotten sick many times so it is up to me to be his external brain and have him slow down and tell him he has had enough.


Christopher weighed only 5lbs 3 ounces at five days old.


Failure to thrive: Try not to worry about the height and weight charts. It is normal for the child with FAS to be in the 5% percentile. As a baby, Christopher did much better once I started giving him baby cereal in an infant feeder. He also ate better when I started spoon feeding him. It took him a long time to catch up in his height and weight he and Stephen were always at the bottom of the scale while Tyler was always at the top. 
 Ask your doctor about giving your baby vitamins. I give my children vitamins still just to make sure they are getting what their bodies need.
Use your best judgment when trying to get them to eat, you know your baby or child better than anyone else. If your child starts loosing weight consult your doctor.


Christopher 8 months old stealing my ice cream




Developmental delays: Your child might need speech therapy, occupational therapy, and/or physical therapy.
We used first steps with Christopher, a therapist came to our home once a week and worked with him. Occupational therapy, OT includes Sensory Integration therapy. He responded well and we felt good that he was on target.
Normal milestones for FAS children are typically: walking at age 2, talking around age 3. All children do things at their own pace so don't worry if your child is early or a bit late on these. Christopher was rolling over at only a couple weeks old he liked being on his stomach, he was scooting around on his stomach at that time also, he started climbing at 3 months, that was a bit scary at times. He was pulling up at 8 months and walking at 14 months and he was talking using  one to two words at 6 months, he didn't start using sentences until after 2 years.

IQ tests for preschoolers often show higher scores than in they do in school years. Christopher was tested once he was 3 and moving out of first steps, he did test very high. The delays in social and emotional development might not be really obvious until around age ten. Don't wait till your child starts school you can teach them with the world around you.
Christopher is very bonded to my husband and I and is pretty social around people he had known all of his life. Since he was so bonded and also advanced we have put him in preschool two days a week for 3 hours each day, he is very quiet totally unlike at home, though his teacher says he is getting better at singing and playing in a smaller group of children. We do see the emotional delays in hi. While he is very intelligent he is easily frustrated and throws some fits more like a 2 year old child would. Stephen is emotionally more like a 2-3 year old also. Tyler is closer to a 4-5 year old now. We are having them tested again soon.
Stephen at age 3 2009 the date on the picture is wrong
Stephen was very delayed in his speech at age 3 the only word he said was Mama. He was also very small for his age and still is. He had a difficult time learning his colors and letters. It took over a year for him to learn colors. We focused on each color we had red day, red week ect. I spent a lot of time on colors everyone kept telling me he is color blind but he would have it one day and it was gone the next. This seems to be a normal thing for some children with FAS.F
My husband and I worked with him on his speech a great deal and we still do and he is now close to where he should be at age 6. We didn't know about First steps when he first came to us at almost 3 or we would have used them to help. We also didn't know he had FAS at that time.
 

Potty training:  Some FAS experts say: "It is common for the child with FAS to still be having issues around potty training at age 6 or even later. The neural pathways are not yet well-formed, as the brain development progresses, there will be progress. Sensory input is sometimes not functioning properly, and the message does not get from the body to the brain in time to act. Also, some sleep-aid medications (like Clonidine) may increase night-time bed wetting. Absolutely avoid punishment for accidents, no matter how old the child is. This is almost always a neurological issue, rather than a psychological one."

Stephen (Tig) feeling proud in his big boy pants age 2.7

I have potty trained successfully my three children with FAS. My 6 year old never has accidents day or night anymore. It did take some time to get there though. He was potty trained at the age of 3 but had accidents once in awhile until he was 4.
My youngest Christopher wanted to start using the potty off and on at 2, I never pushed him and we did use pull ups something I have never done before. It took a year of only positive encouragement and except for night time wetting, he is 100% potty trained. It seemed going slow with potty training was the right thing to do with our boys!
I will be posting a blog about how I potty trained my boys in more details later.





Some of the things FAS children deal with:
Poor impulse controlMore recently, the study of Fetal Alcohol Syndrome: Developmental Characteristics and Directions for further Research (1994) reported that children afflicted with fetal alcohol syndrome (FAS) are less able to delay gratification; indicating, perhaps, that poor impulse control might originate biologically, in the brain.
Source: Wikipedia
These special children need close supervision at all times. Child-proof the house as much as possible. I packed up everything I really didn't want broken still at the ages of 4, 6 and 8 my important breakables remain packed up. I also had my husband and a good friend make me some shelves that are very high up, well out of the boys reach even if they climb.
Going to friends houses that are not child-proof can be a nightmare at best it proves to be very difficult. I am running the entire time after one of the three. A four or five-year-old child with FAS will likely be closer in psychosocial development to a child of two or three. We give them lots of reminders, simple instructions and understandable boundaries. Make sure you go over what is expected of your child or children before you ever them in the house also we keep our rules the same thing every time we go to visit. The same goes for taking them shopping. Let them know what you expect and stick with it. If they are old enough have them repeat back to you what is expected often. We do time outs and we also take along some toys the boys will play with, their Leapsters have been life savers!!

Short-term memory and attention deficits disorder. Some FAS children have short term memory while others like my oldest son can remember the smallest detail. Stephen, my 6 year old struggles with this at times, I have found showing him what to do is more effective than just telling the him. To teach him how to spell his name I wrote it for him, then we used fuzzy stickers and he stuck them to a paper we also glued a picture of him. I had him try to write his name several times and we went over the letters singing them. We then used stickers and did another paper with his name on it he wrote his name under the stickers.. You can also put salt on a cookie sheet and have your child make each letter. This is very helpful once they are in school for learning how to spell words it help children who are sensory seeking to have different ways of learning he learns well when he can feel the shapes like with the fuzzy stickers.
I also made a picture story for Tyler to help him to get ready for school in the morning more independently. When my husband took over morning routine with the boys he told he found it very helpful in getting the boys ready for school for him as well. I guess you can teach old dogs new tricks! I also did this while I was potty training my 4 year old. Both seeing and hearing the steps helped a great deal with my sons. You then go over the steps many many times. I always even when they aren't reading yet write the steps below the pictures.
My oldest was diagnosed early on with ADD but he is not hyperactive at all. He was out of control which is entirely different. My two younger boys are hyperactive and have attention problems. Christopher is super nova hyperactive but he isn't a bad child and he can't help it. He is on medication Intuniv, which was helping really well however the past couple of months his hyper activeness has increased greatly.

CAPD – Central Auditory Processing Disorder, the child might hear only part of what is said, it doesn’t all register with the brain. Stephen has problems in this area as well. An example of this was when he was 4 we were getting ready to go to a doctors appointment he was all ready to go and it was time to leave. I told him to go upstairs and put on his shoes. He didn't come back down so I called up and asked if his shoes were on yet. He said no so I told him just bring them down and I will help you. He came down the stairs in his Pj's! I didn't say a word because I knew he couldn't control what he was doing so I took him by the hand back up the stairs and I changed him back into his clothes and put his shoes on him.
He has times when he zones out it can last for an entire day especially if he is over stimulated by his environment.





A child of 5 might have the emotional development as a child of two or three. Give lots of reminders, simple instructions and understandable boundaries. Repeat what you expect from your child many times. If your child CAN'T do something you are asking then just do it without punishment you can't punish FAS out of them. When you know they can do it but wont that is the time for a time out and you will learn the difference.


Stephen making cupcakes (no we didn't eat them)

Other disorders that can go along with FAS:
 RAD – Reactive Attachment Disorder and mood disorders, bi-polar disorder is common also. My oldest son, Tyler struggles greatly with each of these along with anxiety disorders.
Christopher and Stephen both have sleep apnea. We just got the results from a sleep study done on Christopher and he does stop breathing while he is sleeping.
Children with FAS are prone to a number of health problems since it is unknown which organs were damaged as the birth mother drank.
ODD oppositional defiant disorder, children peeing on the floor or other places besides the toilet is also very common even in older children.



My four boys, Tyler, Robert holding Christopher (Peanut back then) and Stephen (Tigger/Tig)~ 2008

Behavior problems in FAS often includes but not limited too, unpredictable and extreme mood swings, poor judgment, irresponsibility, attention deficit, impulsiveness, lack of normal self-discipline, and difficulty taking social cues.

Resources used: Personal experience, Wikipedia and Medicinenet.com

4 comments:

  1. This is a helpful blog for any mother, and you have covered the essentials to know for children with special needs. Kudos to you for your deep love and care for these boys!

    ReplyDelete
  2. Sherry, You and your husband are Saints on earth! You have such a loving, compassionate heart that God has Blessed these children to have you and Robert to take care of them!
    FEW people would be willing to take on such a task!
    I pray for both of you and your family.
    God Bless all of you!
    Take Care!
    Gene Axtell

    ReplyDelete
    Replies
    1. Thank you Gene! I have been so blessed by them too! Thank you so much for your friendship and prayer they mean so much to me!!

      Delete