The I.E.P. and school search process from hell!

aLots of faith in the Lord and little faith in the Baltimore City school system when it comes to children with special needs!!!

It's been seven months, two I.E.P. meetings (I felt like I was fighting for my child's life because if politics (school system) had there way she wouldn't receive half the services that she needs), eight school visits/arenas, and five non-public school denials...........and finally a non-public school has accepted JayLa's I.E.P. This school acceptance comes with many let downs but this is the best selection based on the few suitable options. It's not over yet........the non-public school, the Baltimore City school system, and I still haven't agreed on a start date, the transportation issues regarding location of drop off, and the most important factor which is that the non-public school hasn't interviewed/hired a suitable one on one aid for JayLa yet!!

I will never understand why the state makes it so hard for parents/children with special needs.  I also think that each state should offer parents of children with special needs classes to prepare us for this long and overwhelming process regarding the I.E.P. meetings and the school placement issues.  I am having great difficulty understanding why the state requires all children to be placed in a school program by age five yet many children with special needs lack the mental or physical ability to function on a "special needs" school level.  So basically, some special needs children are placed in school settings because it's the law not that they are actually learning anything or benefiting for the school program or are they!!?

It would be nice if each state would make it less difficult for special needs families by developing school programs that can service all of the child's needs in one location. It would also be nice if the school hours were realistic for those parents that work out side the home for a living.

One day at a time!
     

Keep Trusting

Well, after this rather long school process I am greatly disappointed to learn that the Maryland School for the Deaf does not want to accept JayLa into their Enhance Services program.  So I cried and my heart ached but keeping my trust in the Lord I must!! I am a strong woman of God so I know that he will give me the strength that I need to fight this battle through filing an appeal. I also know that God will continue to place supportive people around my family and me as we go forward with this school process for JayLa.

Overwhelmed with gratitude

While I was trying to figure it out and fight it out; my God had already worked it out! I am very happy to share the exciting news I just received; the State of Maryland approved JayLa’s referral to attend The Maryland School for the Deaf (which is a private school). What a blessing……….. the State of Maryland will be paying JayLa’s full tuition for school and providing her transportation to and from school daily! Nothing but tears of joy! Thanks to all of you who have supported my family during this process. Your support is continuously needed for the transition from a medical day care to a school setting will be challenging but I know that God will have his way in this process also! Thank you Lord for answering my prayers. Forever grateful!

Make the right decision for her new beginning!

Four years and three months of age I can’t believe I’m discussing school placement. I remember when all I prayed for was for her to live. You see, I was told when she was five days old that she wouldn’t live to see her first birth! Another prayer of mines for the past four years was for her to be healed of her many illnesses and health issues! She has overcome so many obstacles in her four years of living. Now I’m praying that the State of Maryland recognizes that no public school can be modified to fit her needs and that the Baer school can’t service her needs neither. I’ve went on many visits to schools throughout Baltimore and the only school that I feel can service all of her needs is The Maryland School for the Deaf. So now I continuously pray that the State does the right thing and grant her the referral that is needed for her to attend The Maryland School for the Deaf and not focus on the cost of her attending this private school! Please do what’s in the best interest of my little girl and not make me fight for what’s right for her; I’ve been fighting her whole life for what’s right for her and I’m tired. Please allow this school approval to go smoothly!

Behavioral Issues and Medications Just Don’t Work For Her

I’ve been battling these issues with my little butterfly’s behavior since June of 2009. It started with hand biting. Then it progressed to hair pulling, head banging, and knee biting.  She was once enrolled in a day behavior program at KKI twice a week for five months; to no avail! She was placed on several different medications by her behavioral psychiatrist at KKI over the past year; to no avail! I purchased arm and leg immobilizers to prevent her from self inflecting injuries which have limited her ability to be independent and movable!  After numerous visits to different specialist no one can give me a reason why she is experiencing such great distress. I believe it’s because of her lack of ability to communicate with others her wants, needs, and dislikes……….. by the way she is deaf and has a vision impairment! I’m still trusting in the Lord to heal her and give her the ability to communicate with others in a positive manner by using ASL (sign language).

Focus On The Good

After overcoming many difficult health problems in her four years of life she just cannot seem to overcome this hurdle regarding her behavioral disorder. The car ride to the medical day care wasn’t as bad as it's been in the past. YES! I only had to pull over once. With the help of her arm immobilizers and some Gerber snacks I was able to make her happy and continue my drive to the day care! Now off to work.

LOOKING BACK ON OUR MANY BLESSINGS

Four years ago, my little butterfly was in the NICU fighting for her life. Today, I rejoice because of the many blessings over the past four years. Now my little butterfly is living strong without the uses of a C-Pap machine, Pulse Oximeter, Oxygen tank, and Gastrostomy Tube for feedings. We still have many trying days but I trust that better days are ahead as I look back over her life. FAITH!