Military Resource for Parents of Special Needs Children

The Army has lists and resources for everything! Just this week I was joking about how they do not have a resource for special needs families... then my husband sent me this link he just got. Head on over register and get your kit!!!

Families can now order hardcopies of the DoD Special Needs Parent Tool Kit, Special Care Organization Record (SCOR) for Children with Special Health Care Needs, and the Understanding Autism Spectrum Disorders booklet via the Military OneSource website. Installation EFMP programs can order up to thirty copies of each for their program.


Visit the special needs homepage at www.militaryonesouce.com/specialneeds

Frustrations

Alot of times I hear the same phrase - "I don't know how you do it." or "You have got your hands full!"

Truth is I know... but what I try to always remember is that it can always be worse and no matter what you just deal. You pray that it will only get better and thank God for the precious gift of parenting .

A while back I sat down and wrote this journey has taught me..


Things that I have learned-


sometimes people are not going to respond the way you want


you need to prepare for the worst – hope for the best


give it a chance


take it one day at a time


say how you feel but watch how you say it


enabling is not going to make their life easier it’s going to make your life harder


at least give it a try


when a stranger gives a compliment say “thank you”, when they criticize do the same


some people won’t get it, but there are plenty more that do


you get what you get and don’t pitch a fit works is helpful for the kids, but momma’s too

All in all when I look at this

 I just SMILE!!

Links about Chromosomes

Here are some links about chromosomes. Ty has a chromosome deletion on the short arm of chromosome 12. It was found by a CMA - chromosome micro array test.

Two Organizations which we immediately joined...

Unique http://www.rarechromo.org/html/home.asp - an international organzation
Chromosome Disorder Outreach- http://www.chromodisorder.org/CDO/

A littel about chromosome 12 - about 12

The frustrating part is while we have our diagnosis its still pretty rare. However, alot of the deletions or duplications have similar features of speech delay and behavior characteristics.

Websites

I think this is a great website for kiddos of all ages. Your kids can not only work on literacy, but learn other languages also...

http://www.literacycenter.net/lessonview_en.php

Speech Tricks and Tips for when they are little

Some quick tips for getting kids to talk.

1. Shorten your speech. Speek in 1 - 2 word phrases when talking and then as they grow add words. I love to talk but I remind myself I am giving way too many words. Check out this, while creepy its a great example of language for little ones and how you should talk to them.

2. Read every day. When a book has too many words shorten them. Start with these first... Repeat, Repeat, Repeat.  Do the same book and get them familiar with the words you are saying. Some favorites.. any by Helen Oxenbury for the little ones... Todd Parr , too.

3. Playing little games like peek a boo, this little piggy , where's baby  and when they get older asking many questions.. who, what, where why and how.

4. Put them in front of the mirror to watch their lips move. Get them familiar with their mouth. Put sparkly, sticky lipgloss and have them kiss a handheld mirror. This is  great time to "talk to baby". Then have them practice looking into their mouth and tell them to talk to the baby in the mirror.  This was Ty's favorite!

5. Give them signs or sounds. Start with the word, give it a sound and sign. Remember babies, toddlers learn to talk by small steps.

Part 4

During a one of our moves courtesy of the military, Tyler was almost ready to walk. He began to cruise while holding on to someone or something. He also was a master crawler and would crawl anywear (even on bare concrete). But, when we were moving he started to blossom. He was making progress in his gross motor skills. At about 2 weeks before he turned two Tyler would take 2 steps and fall. Then crawl. This began his welcome to the world moment. Tyler went from a really easy going baby to constantly moving. He made up for lost time. He opened the doors to big progress and it started a new set of chllanges.

Soon, I began to joke that Tyler was my own little workout. He did not walk well but yet became soooo fast. He was busy, busy, busy. New behavior challanges arose and in the meantime I lost a lot of weight from always moving with Tyler. It was exausting and luckily Ty has always been a great sleeper and time still took naps and crashed at bedtime.

Tyler started taking interest in Thomas the train! So we jumped on this as an attempt to get speech, motivate his walking and work on fine motor by playing with the trains. The sounds of trains helped and Ty would soon say "choo choo". As a parent we were able to figure out what this meant... video, wanting to play trains or wear a train shirt. But for Ty's grandparents or siblings it was a frustrating thing. 

Tyler did not point so the only way for him to communicate was by a smile.. he never really cried. His speech was very delayed at this point and communication was something not only he needed but we did, too. I knew some  sign language so I taught him "more",  "cookie" "eat" and "water". More became so universal, so did cookie. Cookie became anything food and "more" was everything else. What we learned was when you paired  a word or sign they know with another new word you start to open the way for more speech, more words and help give them their own "a ha " moments .  It also helped make connections for those around him to help understand what he wanted or needed. 

 Despite how much  he was interested socially, he was alot of times disinterested in things going on around him or playing with toys. When we engaged Ty by trains or by  letting him explore (sometimes difficult for the parents  :) )  he really blossomed. Now his interests are so vast and he has really becomed so much more involved with the world around him but when we as parents always worried about what would happen if... we were holding him back.  This is still something we are  constantly learning as parents...

He also drooled like mad. My mom always gave me a hard time with my other two children about bibs... this would change with Ty. We had tons of bibs. He would always have a wet shirt or it looked messy. We had to help Ty  become aware of his his mouth. To work on this I used a hand mirror and started showing Ty his mouth. I would model open, close and show him. Then I would have him do it and say the words. His favorite was the " kiss the baby". We used some sparkle lip gloss and kissed the baby in the mirror. Not only did this help with drooling, but alot of his oral motor skills and speech.

Some pictures- His first haircut...

 During our move....

Making progrss with walking... Look out Mom... getting ready to be busy, busy...wonderful news!!!!!

Part 3

In April 2006, we moved our family. As soon as we arrived we began the process of immediately getting Tyler's services started. This is always such a lengthy process, but one we could not delay. Early intervention and therapy have been essential for Tyler.

One day, after my husband had put up our train table we saw Tyler pull to stand. This was just one of many milestones that would happen in the next 6 months. Tyler was now 18 months and it seemed once he began to pull to stand the world was his to explore. He was on the move...  We started going to the pool with Tyler and I noticed how the water improved his motor control by giving him resistance. Going to the pool was very theraputic and looking back I should have had him in the pool daily. When a child like Tyler has a bad sense of body awareness and where his body is in time and space the pool helps by giving him feedback.

His eating also began to blossom during this time. He had some sensory aversion to textures and so by gradually increasing textures and working with various speech tools this seemed to also increase. Whenever we see progress in Tyler, we often see the progress in one area at a time. During our 6 months in South Carolina Tyler was gaining many milestones in motor function.