School Experiences

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School Experiences

In this section are accounts of what school is like for a child with Hydranencephaly as well as some of the other issues we face.

I’ve put the information into a question and answer format so it’s easy for a family to find the information they want. The questions were asked on the Hydranencephaly Mailing List

What is school like for a child with Hydranencephaly?

For Kayda (December 2, 1988-June 23, 2000), her first year of school was something of a nightmare-for me anyways. The school didn't want her there, felt she had a “severe behavior problem” (no one ever explained to me how a child with no brain could have a behavior problem) and kept her in a room by herself much of each day. They seemed to feel that because she was in the building she was “included”. So, we moved. Her next 4 years were wonderful. She was fully included and the staff constantly came up with creative ideas in how to accommodate Kayda and her needs. The whole school loved her. However, she almost always missed more school than she attended. At first I would keep her home for weeks after each illness but gradually came to realize that she would never build up any resistance to viruses if she wasn’t exposed to them. For several years she did ok and recovered quickly from each illness. She loved school and got a lot out of being there. She’d actually get mad if I didn’t let her go to school-even on weekends. But, about six months before she died, she kept getting one illness after an other and she didn’t seem to be happy at school any more so I made the decision to keep her home. This was the best decision for Kayda. It isn’t what is best for everyone, which many people seem to forget.

During her school years we and the school had access to a wonderful program that came in and helped the school come up with ways to include Kayda in a meaningful way. This made all the difference, although the school was already doing a wonderfully creative job. See some of the suggestions they gave for Including Kayda in Part 3 of this chapter.

For Jason, (August 13, 1990-May 31, 2001) who was very medically fragile school is: He is seen daily between O/T, P/T Teacher and APE (Adaptive PE). The schedules are approved by me. If theymiss an appt. it is rescheduled. They all do about the same thing, range and motion, including the teacher. Jason has the same teacher since he was three. We always have summer school with someone coming once per week

For Paul, (July 26, 1993-May 14, 2003), who lived in New York state: Here in NY your child must attend school unless they are medically fragile. I could get a letter from Paul's pediatrician and he could stay home and the school district would pay for home therapy. I don't know how much of a challenge that would be but it is an option for us. I send Paul five days a week to the Center For the Disabled here in Albany, NY. He goes from 9 to 3 and rides a bus with a lift both ways! He has OT pt speech, spec Ed and adaptive PE. The center a has a heated pool where he get hydro therapy and a nursing department for Paul's feeds and med requirements while he is there. (That is where we have had some interesting problems, nursing). Paul started with a pre school (part of early intervention program) at the age of a few months old and at two, started going to the preschool itself from 9 to 1 pm three days a week. I didn't think he would handle five days so we started off slow. I keep him home when I can to spend time with him or if I know school in short on help. At school, now, Paul is in MOVE program, I think most of you know about it. They put Paul in a prone stander, tumble form chair, his wheel chair and a side layer through out their daily activities. The Center is very well known through out the country and there is a telethon every year to raise millions of dollars to help keep the center running. You can see where all the money goes. The center also has clinics, like the dentist where I take Paul. They have an ortho, neuro, hand clinic and a ton more there. They also have family/parent support groups that aren't well attended but the center tries!

Kristen (July 4, 1982-September 10, 2003), in Michigan attended a center school for disabled children. Her experience has been very positive, for the most part. It's always the individual teacher that makes or breaks it. For problems, I go directly to the principal. She is very centered on what is best for the child, and LISTENS to the parent. We have always been able to reach agreements. The school always has nursing, OT, PT, speech therapists and a big warm pool. I send Kristen when she is healthy enough to attend. I haven't had a problem if I want to keep her at home. Homebound teachers would be available if she couldn't attend for an extended period. My experience has been a positive one, but you have to keep involved, with drop-in visits that are welcomed by the staff. School is available 5 days a week when the children turn three, with transportation provided if you need it. Busses have a driver and an aide. They always have lots of activities planned and take the children to all kinds of community experiences...shopping, restaurants, movies, library. They incorporate therapy into all their activities. I have been impressed with the level of care at this school, and it has won many awards for excellence.

Rachel, age 10, in Scotland, Rachel’s education is going well at the moment. She attends school depending on her health especially during the cold winter spell. Most of the school staff are understanding that if she is unwell i wont send her in. Rachel is collected and brought home by school bus. She takes part in many activities and has all her ot pt and vision therapy in school. She has use of hydrotherapy pool and goes off on outdoor trips depending on the weather. On April 16th Rachel will move into a new school, which is part of a junior/primary school with children her own age. She recently made me a beautiful painted mothers day card and brought me home for Easter her own decorated plant pot of flowers.

DeAnna, brother to David, 17, US: My brother David is 17 and I am 15, we go to the same school. For him having hydranencephaly and going to school there is not a lot he can do, but the school is great and they have him do "normal" things. David gets grades as any other student and I have to say he has been on honor roll and all his grades are better than mine! When I first started High School I thought it would be hard dealing with my brother, but it was really easy, since he was older and knew more people. Sometimes I can hear other kids talking and making fun of David and me behind our backs but I learned to deal with it without violence throughout the years. I am happy to say that David got nominated for a national achievement award by our guidance counselor, and David will be graduating next year!! A giant step in his and our lives!

Please note: the grades and David’s’ activities at school are similar to those of the rest of the children rather than academics.

Dru, mom to Logan age 4, US, In our school district, Logan is the most profound student that they deal with. In fact, he's the most profound student they've EVER dealt with, so we're breaking new ground, so to speak. However, these teachers (3 certified teachers, 7 aides, one of whom exclusively takes care of Logie--she is an RN) have tons of experience with kids who've had one or two of Logan's problems, just never had them all rolled up into one student before. After all, he IS a pretty cute and unique little package!
All his therapists still come to the classroom to work with him, all his equipment is there, in fact, an entire set of cabinets is devoted to Logan's stuff. He has OT, PT, vision, speech, and adaptive communication therapists who come to the classroom. The other kids are jealous because Logan has special people who come to see him, plus they are jealous of his cool toys and all try to get into his little room when he's not using it. He's not missing out on anything! He has a feeder seat and a stander there, in addition to his little room and a ton of switch toys, music, and they just got a new visual stim kit for him 3-4 weeks ago.

Most of the other kids in the classroom do have some type of disability, although most of them are only speech impaired. There are several nonverbal kids and autistic kids as well. They have a really good program, and Logan will be in it again next year. After that, though, he will go into the district's life skills program, which is mostly self contained. I know there's still interaction with the 'normal' students, but on a limited basis--which is perfect, because of the concerns that exist for our kids in school as they get older (teasing by other students, etc.).

Heidi, mom to Junior, Junior is on a home program through the school system and has never been in a classroom. For him risk of contracting an illness is too great. Prior to having Junior though I worked at a private school specifically for children with severe multiple disabilities who were medically fragile. The pros in this case were that it was a very controlled environment where they were always a few feet away from a nurse, respiratory therapist, etc. Another pro was that everything was modified for the wheelchairs, computers all had switch access, special therapy programs were used daily with each child, as well as daily speech therapy, APE, Respiratory therapy, OT, PT and others. Honestly though I have never seen another school which offers this level of a program. With Junior not only the health but also the safety risks of having him in even a segregated program would be very high. The program offered for Junior here I was told was for all immobile children without severe behaviour problems. When I visited I noticed first that they had me visiting the program he would attend when there were no children present. I then read the goals, one dealt with biting, one throwing (large) objects, many of the kids were able to get around quite well and Junior has no way to even get away from this.

Diana, grandmother to Kirsten, age 1 ½: when Kirsten turns 3, she will be attending a pre-school sponsored by Easter Seals.The class selection is based on her capabilities (which at this point is almost nothing) and her OT/PT objectives. Easter Seals opens their programs up to families of "normal" children if the parents wish their "normal" children to have association with special needs children, as opposed to the public schools where it is reversed.

Louise, mom to Jaime, 21, Manitoba, Canada, The Princess J has been in both a special school, a regular classroom (Junior High level), and a special needs classroom. Jaime first went to a special school with other challenged children when she was 3 years old for 4 weeks till the seizures kept her home. Then she tried again when she was 4 and lasted 8 weeks. They treated her really well and she enjoyed going. They had Christmas concerts and birthday parties and started with symbol recognition. She then became bed-ridden for the next 8 years and we had a special ed. teacher come to the house every other day for about 3 years (age 9-12). The teachers we had were awesome except for one - who was totally clueless as how to communicate with Jaime.

She went out to school in Grade 7 afternoons only. This was a regular class. Her nurse also was her full-time para. This was great as Jaime and her already had a good communication skill going and I regularly got first hand knowledge of what kind of day she had. The teachers were awesome there with her as well as the kids. Her home economics teacher even went so far as to make up Jaime's communication symbols for her class the next day and had Jaime participate in a switch-used electric mixer, popcorn maker, etc. When there were tests to be done, Jaime was taken to a private room so she could answer yes/no with her switch. One of her friends in the classroom one year went to Disneyworld on holidays and brought back an ornament for Jaime. I don't know who was more excited - her or me!

The next year Jaime had different teachers and many of them were upset that Jaime might be in their class and take time away from their "normal" students. What a change - not for the best!!! That was the year she started in the special ed classroom - I don't think she minded one way or the other.

We had one bad episode with a student who was asked to move off the ramp railing so Jaime wouldn't knock her off with her wheelchair when she went by. The girl had the audacity to move and comment "I had to move for that". She was brought in the next school day to Jaime's room to meet her and her teacher and her para and the vice principal. She was asked to apologize to Jaime for her rude behavior. Prior to the meeting, Jaime's voice recorder was set to request if she could go to the sock hop (dance) now. Well, after this girl apologized (because she was being made to), Jaime activated her recorder and you should have seen this girl's face when she realized Jaime could understand!!! It was priceless and Jaime just smiled at her and left to go to the sock hop!

I think everyone even Jaime learned something through those different experiences. The smoothest was the special ed classroom as you did not have to do as much training and they had the equipment to produce their own symbols so it alleviated my many hours of preparation for the regular teachers who refused to learn.

Sorry this email is so long, but I feel we each need to make the decision for our kids based on our kids personalities and what is the goal of sending them off to school. In the latter years, it was to give Jaime a social experience.

Is Inclusion the best option for my child?

Nancy, mom to Daniel age 8, US, I think there are always exceptions to the rule and with this in mind I think that public schools for the most part are glorified baby-sitters. And that's not a bad thing. My children that require "special needs stuff" have the most wonderful teacher in the world. BUT I still think they can get all of this at home. Socialization, PT, OT, speech and play. When I adopted them they were all in school so I kept them in. I am going to limit their time in school next
year. I would like to keep them home full time by the next year. When the children have come home to my house the new teacher always says that the other school didn't do what they should. Then after a few months the new teacher says that the child has improved so much! Then when I moved to a new school they said the same thing. Personally I believe that my children would be in the same place today had they not gone to "school" I think we need to rethink what "school" means.

Danielle, mom to Paul (July 26, 1993-May 14, 2003), US: I have to jump in here. Pauli attended a center for the disabled so it was all people/children with disabilities. They had a preschool, school age program and adult programs. He was in the school district for 6 month and that was a HUGE mistake for me. They could not handle him at all, this was a classroom of teachers who had 20 yr experience with disabled kids. They were awful and I won't disgust you with details but he stayed home more than he went to school. The only time he went was when I HAD to work during the day or didn't have a nurse for him and I tried to work only at night. If that says anything. .. .
The center was WONDERFUL!!!! He got therapy(ies), hydrotherapy, socialization and was in a M.O.V.E program with the M.O.V.E equipment. He got soooooo much attention there - i really think he developed so much with this program. I wish there were "normal kids" around but the benefits of the center out weighed the school district program too much. The equipment the center had would never have been provided with our school district and our district is a really good one. They just could have never afforded all the equipment the center has. They center gets more grants and a has a huge annual fundraiser to get what they need for our community. Not only did he get school/therapy there but all his clinics were also there which was very convenient. He didn't miss much school for an appointment because he was right there in the same building. There were hand clinics, dental clinics, ortho appointments. . . . you get the point.

If you have a center in your area don't rule it out. Weigh all your options and go with your heart! The center was ^Pauli's^ best option to develop to his fullest! I liked the interaction in the school district he got with "normal kids", but our center was also one big social center! I got him involved in other community events to " teach " others about him . He played tee-ball and was on a bowling league. In tee-ball the " normal " kids helped the kids in wheelchairs play ball and the same with bowling.

April, mom to Chris (September 23, 1988-February 1, 2003) I for one, don't like the whole inclusion thing. I never felt comfortable with Chris in that type environment. He did have recess and attended other activities with the "normal" children at the school. I hated when I overheard him being picked on by the kids. Unless a child has the FULL potential of higher learning, I don't recommend it. Only MY OPINION

Sandy, mom to Jonathan, age 1 ½: I would never do inclusion again. I tried it once and I thought my child was going to be killed. There is no way I will "ever" let Jonathan go to public school.

We have a wonderful MR/DD program which my children attend and I don't have to worry about them being injured "by anyone."

I found regular classroom teachers do not want inclusion. I had several tell me, "I did not go to college to learn to teach your kind of child."

OK then, I pulled them out because that told me they didn't care and were not going to do what was necessary to protect my children.

Barb, mom to Kayda (December 2, 1988-June 23, 2000) BC Canada, as stated previously inclusion is the only option where I live. I’ve now experienced it with 2 children, both of whom have major challenges and are/were the most severely challenged and, “lowest functioning” child in our school district. I’ve learned that inclusion can work, if everyone involved wants it to. And, yes it’s good for kids to be around children with special needs. I’ve watched 2 schools now grow and become more caring after having been around Kayda & now Trevor. But, I think that the children themselves miss out on more appropriate activities when they are fully included. It’s worked well at the elementary level as there are always younger children to spend time with if they’re noisy. Kayda’s principal was brilliant at coming up with ways to help Kayda and the other children. He had her arrive at school earlier than the other children so she could greet them with her big mack and also collect attendance slips. When she got to the end of grade 4, she was in the middle of her 3 month long yelling spree. We all knew that a typical grade 5 class wasn’t going to work. The principal suggested keeping her registered in grade 5, but having her part of a grade 1 and 2 split. That turned out to be the best solution. The kids in the younger class are much more tactile and outgoing than kids in grade 5 and beyond. The only problem we had is that Kayda liked to listen to stories on her Spinoza bear at school and she didn’t like the “baby” stories appropriate for grade 1 & 2. She adapted. Unfortunately she ended up getting one illness after another in October and then stopped going to school all together by January.

Kayda likely, would have done well at High school as she was a listener and would figure that the teacher lecturing was just a story. However, there would be very few activities that could have truly included her. With Trevor (not Hydranencephaly but similar developmental level), he is much more interactive and needs to be doing things. In Elementary school he does fine floating around the school to which ever group of kids is doing something most appropriate for his mood of the day. But, in high school the kids just aren’t interested in a kid like Trevor. They’re too busy doing their own thing and he would most likely spend most of his time in a room with just his aide. For that reason he will be going to a school that has a class with other children with similar needs and abilities and a really good program. He’ll be out and about doing activities he can do rather than sitting and watching kids do things he can’t.

So, I think inclusion is good, but it’s not for every child. And, in the long run I feel/felt for Kayda & Trevor that other settings would have been better for them. They would spend more time doing appropriate activities than they do/did in regular school. Trevor was fortunate to be able to tag along with the only special class in our area for field trips and other special times for the first few years, but that class no longer exists. That was ideal; and gave him the best of both situations. For both children they had lots of opportunities to be around typical children outside of school time. I don’t really mind who they’re with at school. I just want them to have fun and be around other kids. It works better in the younger years I think.

Note in June 2006: Trevor has just completed his first year at high school in a special class. What a difference it's made in his life. His class has 5 children in wheelchairs and then a number that are mobile and somewhat "higher" functioning. Right from the first day of school I watched the other children actually interact with Trevor and watched him respond. He's been a participant this year rather than an observer. The last 2 years he was at Elementary school he was very tired so only went a few hours a day. This year he's attended 5 hrs/day and only rarely needed to stay home due to fatigue. He's improved in so many areas. I'm now a firm believer in separate classes for our kids.

Karen, mom to Heather, age 3, US, I was going to say that maybe the inclusion benefits would depend on the child, but I really haven¹t been able to come up any case where it would benefit the child. If they are in a special needs school with other kids like them, then the classroom will be equipped with the toys and switches that are best for them. They would also have PT, OT, and teachers that have experience with their special needs. In Heather¹s home based education I can see what the teachers and therapists are doing with her and can suggest new things. Also, it would be a two teacher: one student ratio instead of one teacher: two student ratio. At home she is safer, more secure, surrounded by any meds she might need and her own equipment is available without needing any transport.

With my other kids, they go to school to learn interaction with other kids and independence for themselves. It¹s not like Heather needs to learn to live independently. She never will be able to live without someone caring for her. However, in my IEP and IFSP goals I do want her to learn to do some things independently so that she can get a sense that she has control over some aspects of her life. I would like for her to be able to ³read² to herself using a program (on a tape deck or the computer) and her switch. I would like for her to be able to pick which outfits she would like to wear if given a choice. I would like for her to be able to move around on the floor independently so that she can choose her activity or her view. I would like for her to be able to communicate basic needs to me so that she doesn¹t feel that she has to cry for everything. The human being is designed to need some space to make decisions.

I guess to some it would appear that I have set goals that are unreasonable, but I think for Heather they are appropriate.   I want her to develop to her fullest potential. She has already achieved some of them and is half-way to some of the others.

In the Fall she starts school at Overbrook School for the Blind. She will be in a classroom that has about 5 students with global delays and 3 or more teachers, therapists, and aides. The students are fed in the classroom so about the only interaction they would have with other students would be at assemblies. She will have the benefit of being with other kids her age and her ability level without the danger of being stepped on, pushed, dropped on, etc. No one there will be teasing her because of her differences. The classroom has many of the same toys she has played with at home along with a few that we couldn¹t afford to have for her before. She will still get therapy and best of all, everything will fall into a daily routine. (Something that it is impossible for me to give her here!)

The ones who would benefit from the mainstreaming of our kids would be the ³normal² kids. They would be able to learn at an early age what the contributions of special needs kids can be. They would learn how big the special needs child¹s ³little² achievements really are. And they might understand them as people. My kids have learned some of these things by having a special needs sibling. It¹s easier to understand if you are with
the special needs child on a daily basis.

So to make a long opinion longer: I don¹t see the overall benefit for special needs kids to be included in a standard classroom unless the resources are there for them to be able to participate.

Lynne, mom to Nikki, 6 US, Nikki is in a "regular" classroom setting 1 day a week and she loves it! I feel perfectly safe in letting her go as she has a 1 on 1 para whom I dearly love and trust with her! The only problem that we had during the first month was inclusion, that is, not just having her in the classroom, but including her in the many activities of the classroom! But i called a IEP and that soon changed! Since then the only problem that we have is the teacher "remembering" that Nikki needs to have messages sent home too!

As for the other 3 days a week, she is in a Central Learning Center for all children with needs from 5 to 21 years old. Some of the kids I find myself wondering why they are even there as they appear to be perfectly typical! Of course she has her Para there too, and the kids dote on her! She has only been out of school since last Wednesday and she already has 3 little girls calling to see if she can come play, and go swimming with them!

Lisa, mom to Noah, age 3, Australia, Noah isn't at school yet, but goes to early intervention and I think we have pretty much decided to send him to a special school. I feel that they just know how to deal with his needs a lot more and he will get a lot more from them as they deal with kids like him everyday, where as in a regular school they would have to learn it all, and I dont know how much he can really be 'included'. It is nice for him to interact with kids that are verbal, but he can get that other places like church and home, where as I think school should be focuses on giving him as much as possible, and here that means he will get a lot more therapy including hydrotherapy at a special school from teachers and aides who are trained specifically to teach children like Noah

I should clarify something. I believe that a lot of kids with special needs can get a lot out of a regular classroom - especially kids who are autistic, downs syndrome etc as they get to see other children and model from them, but I feel that hydran is such a severe disability that Noah (others may differ) will not really get anything more out of going to a regular class – just because the children have no disabilities. The interaction would be great and I think the other children and teachers could learn a lot FROM Noah, but the benefits of a special school here outweigh this.

What sorts of problems have families had, and how are they resolved?

Barbara, mom to Michelle, age 5, US, When her neuro dr. testified, he was asked repeatedly, with me sitting right there, how soon Michelle would die. He gave a beautiful answer. He said that he guessed that her cognitive age was about 2mos, which is really not accurate, but he admitted that he was her neuro dr. not a teacher, so not to rely on his opinion of her cognitive abilities. The nice thing was this: He said that he didn't know how long Michelle would live, but that she was obviously well loved and cared for, and that her mother enjoyed her company, and that it was the school district's job to educate Michelle to her potential to help her enjoy all of the days that God gives her on this earth.

Well, then the CCS dr. (California Children's services) testified.. This dr. sees Michelle for about 10 min every year. He is in charge of the cp kids for 8 counties. He has ever only prescribed a wheelchair for her. Everything else we have asked for, a swing, afos, etc., is "not medically necessary". When he sees her, he lays her down, pulls her to sitting by her hands, her head lags, and he says "no change". He denied her a corner sitter once, because he said she couldn't hold up her head. We got a corner sitter in another way, and when I demonstrated to him that she could indeed use the sitter and hold her head up, he said "not functional".

I won't go into detail here to explain who this dr is as it was his opinion that the hearing officer relied on. This dr said that he had treated 2 kids like Michelle in his life, and had read "several articles". so he knew about these kids. His testimony was that Michelle needed no therapy at all, and no teacher. When asked what would happen if she got no therapy, he said she would get contractures. But we could "roll around on the floor with her and she would enjoy that". He said that nothing she ever did would be functional, so she needed 'nothing". He knew from his articles, that she had never and could never change. When confronted by our attorney by testimony to the contrary, he said that the changes weren't "functional".

We presented as an expert witness, a professor, Ph.D who teaches the teachers to teach kids like Michelle. By his own estimation, he had experience with 200 kids like Michelle. He has taught classes about these kids for years. He had actually spent an hour or so in our home playing with and observing Michelle. He is not a Christian, but he said that his inspiration was a little girl whose picture he had on his wall; she had only a brainstem, yet she could learn and she deserved an education. He said that an education was to help a person to enjoy their life and to reach their potential; it was not primarily to enable the person to function in society. The hearing officer did not find hem to be a "credible" witness.

At one point in the hearing, the opposition began to ask me questions about my other kids. I have two troubled kids, adopted from Africa. They began to ask how much our family was costing the school district. (Michelle was born a US citizen).

At the end, the hearing officer found the district negligent and out of compliance, but didn't sanction them nor require them to make up for their negligence, because Michelle would not have benefited from the services that they failed to provide.

During all of this, the teacher kept me informed of what was being said about our case in the community. I was called a trouble maker and an terrible person for taking the district to court. (The district is always in court with one family or another, some have to fight in court every year). The various teachers couldn't understand why I would ask for services that would just be wasted on Michelle. The teacher knows some of the people involved in the case and tells me they are nice people. When I asked her why they are so mean with Michelle if they are such nice people, she (who loves Michelle and despises these people's attitudes towards her) said that we are really a test case. The district wants to make an example of Michelle.

At one IEP, there were 21 people! At about $100 an hour for 3or 4 hrs you do the math. This fair hearing, with 3 attorneys and many witnesses and hours of preparation and testimony must have cost the district enough to provide any service Michelle needs for the rest of her life! They are willing to waste tax-payer money to deny a child services that could have been provided with the same money.

Well, I learned that the district tries hard to use nice employees so that the parents feel that they are being well taken care of. However, these same nice employees are hiding lots of information behind their smiles. I learned that it is all about money. Right now, autism is the favorite handicap.. Some autistic kids are receiving 40hrs a week of in home services. The cp kids get very little. The parents of the autistic kids are really well organized and know how to fight. The teachers of the autistic kids are screaming for more help, as these kids kick and bite them. Cp kids are easy and not as demanding. We shouldn't have to fight each other for who gets the biggest share of the pie. Autistic kids are in most cases not going to contribute any more to society than cp kids. Why are they seen as more worthy than other kids? And why does contributing to society have to be defined on their terms? What about the gifts that our kids bring to society?, compassion , love endurance, patience, trust...

I am incensed by all of this. Michelle has suddenly outgrown her stander, and I know that the ccs dr from the hearing will find a stander not medically necessary (our regional center paid for it last time) If Michelle doesn't stand, her hip will not form properly and will eventually be subluxed. She would eventually have surgery to cut off the head of the femur, which would permanently preclude standing. She would develop osteoporosis and be stuck in bed. Kids that are always in bed get pneumonia. Do they really just want these kids to die sooner?

Other pages in this section:
School
Suggestions For Inclusion
Inclusion Activity Examples
Sample Books
Special Education Glossary

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The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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