My husband Scott and I are foster parents or also called extended family home parents of a 12 year old young man. He joined our family when he was 8. He is considered medically fragile, medically complex, and severe profound. Here is a list of some of his diagnosis, 35-36 weeks completed gestation, Spastic Quadriplegia, Seizure Disorder, Osteopenia, Horseshoe Kidney, Hearing Deficit, Hyponatremia, Iron Deficiency Anemia, unspecified, Hydrocephalus, Cleft lip and cleft palate, Scoliosis, Chromosome Abnormalities, Multiple congenital anomalies, Astigmatism, Patent ductus arterioles, ASD (atrial septal defect) Chorioretinitis, Reactive Airway Disease, Hypoventilation, Periarticular calcification, Pyelocalyectasis, Undescended testicle, Pelviectasis, Neurogenic bladder NOS, Osteroporosis, Static encephalopathy, Mental retardation, Developmental Delay, Feeding difficulties, and History of recurring pneumonias.
Some of the procedures he has had are, repair of cleft lip and palate, placement of gastrostomy tube for feeding, fundoplication, tracheostomy, infusaport placement, and shunt placement.
He has always missed a lot of school. Sometimes due to health issues, sometimes due to Dr. appointments, and sometimes due to weather. When he is sick, it takes him longer than most kids to recover and also we do not like to take him out too soon as he could easily catch something else. We do try to schedule Dr. appointments around school and take him in the afternoon, but that does not always work out. For instance, he attends the Children's Developmental Clinic and that takes about 4 hours or so of seeing all of his specialists. They also sometimes will run tests, X-rays, etc. He gets fitted for his AFOs, and anything else that he might need. This starts at 8AM and goes til 12 noon or so. He also attends the Boys Town Cranial Facial Clinic.
We have always kept him in when the weather is bad. If the weather is 25 or below he stays in. I know that one cannot catch a cold just by weather temperature, however, our son, has Osteropenia (brittle bone disease) and I cannot help but feel that he hurts when the weather changes and dips down. So we keep him inside. I try to put myself in his place. Also we are fortunate enough to be able to choice him to JP Lord school and we love it and so does he. But if the road conditions are terrible then that is also a factor we look at as well. You must understand that when he misses school for any reason, we are not taking him out shopping, or anywhere else for that matter. We are home caring for him.
Last summer (2011) was the hardest summer we have ever had with him. It started in July with the diagnosis of a pseudo cyst that was found behind his g button. That was drained, but it led into the diagnosis of the first of two shunt malfunctions that we were to deal with. The neurosurgery team replaced the tubing and moved it to the other side of his abdomen. The cyst and 1st shunt malfunction hospitalization started 7/14/2011 and came home July 28. He was then readmitted on August 9, 2011 with a second shunt malfunction and had another surgery and did not come home until August 24th. Now, he has had really no time to recover from either of these major surgeries.
He was readmitted on August 26 with Pseudomonis (pneumonia in the trachea) and was not released to come home until September 13.
So under this law, he made the truancy list before he even had a chance to start school. It was not due to playing hooky or laziness, or anything else. He was in the hospital and trying to recover. We did however, take him to school September 27 as he was doing well. He did miss in October because he takes Pamidrionate Bone Drips for bone density and that was over two days. Sometimes they wear him out and he needs to rest. In November he was admitted with Jaundice and it turned out that he had a gall stone. (11/21-11/23) In December he had his dental work done, which requires him to be put under anesthetic.
There are also other circumstances that we deal with. There are times when he will get his days and nights mixed up. I do not think it is the school's responsibility to 'babysit' my son. If he is up all night playing in his bed and I know that he will sleep for the most of the day, he can sleep here at home. There are also various meetings that we have with those from various agencies that work with us and him. They need to see him and there are times when they have come to school and they work around his schedule for the most part, but there are times when it cannot be helped. He also has his court reviews as well.
I have been a Special Education Para for many years and at his IEP I suggested to SKYPE him in with his class and work with him here in the home while his teacher can see us and was told no. I do work with him here when he is home regardless as I do not want him to regress and lose what skills he has gained. Some of the things I have worked with him on are physical therapy, i.e. stretching, range of motion, head control, focusing, visual tracking, hand to mouth, i.e. teeth brushing, using his communication device, reading to him, social interaction, helping around the house, i.e. weather permitting his chore is to fill the bird feeders and squirrel feeders. He has helped mix cake batter, make cookies, etc. So you see when he is home and not recovering from an illness or anything he not left to do nothing.
He missed in January for weather and then he got sick. He then was hospitalized from 1/19-1/26 because of sickness. He is home and doing better, but we are keeping him home as he is finishing an antibiotic and this virus is around. We plan on sending him back once his antibiotic is finished. Hoping that by that time this virus will be over with.
There needs to be a change in this law to accommodate children like our son in this situation. These kids fighting everyday to stay healthy and sometimes staying alive and the least little thing could turn into something major. Their families are fighting for their kids as well.