Ginormous Decision

I thought long and hard about this.....to homeschool or not to homeschool. sigh.
Gillian had a really hard year last year-she fell behind and totally shut down. She had
lots going on last school year. I don't think she handles the pressure well-they were moving
ahead so fast and with all the stuff going on with her absence seizures, etc it added to that stress. Honestly I can't imagine what all was going on in her little mind. Two of her teachers had mentioned that the school setting was not really appropriate for her situation (and recommended homeschooling her). She was overstimulated by the sounds, and everything else. Towards the end of the school year I really tried to get her more help but honestly, I was not happy. It should have been more. I think of how they are going to move her ahead when she is behind, and how its all going to be over her head. That would add to the pressure and have her shut down yet again. I thought about fighting to get her a one on one aide, but that would involve threatening law suits , etc. I am not into nastiness. I would if I had to, of course, but I would rather put that energy towards something else. They mentioned if Gilly did not finish her school work that they would tell her she would have to go to detention. When they sent her to detention in first grade it was NOT good-she really freaked out. Because she did not do what they wanted her to do, they went out on the playground the next day and made her serve detention again! That was just plain wrong.
The school called me almost every day about something. Even though it is summer, I am still tired just thinking about how often they called and for every little thing. After doing a little bit research just to explore options, and thinking of how I can space out her schooling during the whole day and when it was right for her, it just really sounded perfect. So I dug a little deeper, making calls to people I know who homeschool. It just kept sounding better. So after much thought, I decided to take a leap. I have sent off enrollment apps to 2 different charter schools. Both sound very good. I figure, whichever one gets her through first I will take, just as long as it is in time for school to start. I am adamant now about not sending her back to the classical school setting. We are going to have fun playing educational games-and hands on activities. She learns better through visual and hands on. I have talked to her about this and she seems content with it. One thing I was concerned about was getting her socialized. Both charter schools I have sent apps to have classes that will involve other kids in the same age group that meet on a weekly basis. I also joined a moms club in this area that also has stuff they do regularly-and it happens that there are a couple of Gillian's friends from school go to those activities.
I have a friend who is going to babysit for me so that I can get some "me" time regularly as well. It seems it will all work out just fine. I know in the beginning it will be a challenge-I have been warned. Getting in a routine and being disciplined is going to take some effort! From what I have read, kids with issues like Gillian has do much better being homeschooled. Fingers crossed that all goes well.

Glasses revisited

So I took Gillian for her regular eye exam-we have been taking her about every 6 months. But with all the issues she has had the past few months, we were a little late in getting her in. No worries! I honestly went in thinking she would have 20/20 again, like the last 3 times. I was in for a surprise! Her vision for distance has gotten a little worse. So the doctor wrote her a prescription for a new pair of glasses. She said it is VERY mild, and this will be a trial to see how she does with them. We see the doctor again in a few months. I was so hoping for 20/20, like I mentioned. But, I am SO happy its not for close up stuff! She picked out some cute copper-framed glasses. I hope she will wear them like she is supposed to.

Here she is pictured with a pair of the funky glasses they had on her during her eye exam! LOL!

Since it has been a while, I will update on something else.

When Gillian was 4. she was given the Autism dx. Although the educators and some other folk insist she does NOT have autism, her neurologist insists she DOES (as mentioned in a previous post). I have read lots about Aspergers lately (another subject revisited since her hospital stay in May) and its her to a "T". We see the neurologist in a couple weeks and I will be taking my checklist with me as proof. I am looking forward to meeting with the doctor . I am sure she will fully agree with me. I want them to put it in writing also, as it may enable us to get her more help at the school. I will do whatever I can.

Although initially in May when I heard the "A" word again, I took it hard. But as I search for more information I feel at peace with it. I am grateful its not worse. She is who she is. I also realize if she did not have all these issues she would NOT be who she is. Its a blessing and a curse at the same time!!LOL!!!!!

Positive Change

After a hospital stay a couple weeks ago (4 days) to figure out if her behavior was actually seizure related, behavior, or both, they concluded it was behavior. They blame it largely on the fact she is on the Autism Spectrum and the developmental delay she has. I was devastated. I felt like we were back to square one. Basically the doctor said we just need to cope with it all, and that it could go away in anywhere from 6 months to a year. I was so hoping they could give us some extra help, make some kind of suggestions or start her in some kind of therapy. I had to process it all, and figure out what to do next. It was like I was mourning-I cried for days. But I got up dusted myself off, and started using some new tactics to see if it could help her.

Its been a week now of trying new things and at this point it seems to be working-thank goodness for that! Also I believe her medication (for the seizures and its also a mood stabilizer) is working better for her.

Gillian has NEVER been affectionate. The past several days, she has walked up to me and hugs me multiple times in a day now. I can't tell you how good that feels. My son was like that alot, and still is. For my girl to be doing this is a dream come true. I will take all of them that she gives me. She normally has never given hugs unsolicited. There have been many times I have wanted to hug her and she would not let me, so I was so excited.

This past weekend I was alone as my husband was gone out of town. I was extremely stressed out, I had no idea how I would handle it. He always helps me with Gilly on the weekends.

Amazingly, Gillian did so well. No trouble at all. We had fun, and for the first time in a looooooooong time, I enjoyed her.

I have spoken to her school principal about making some changes to help her at school. At first I thought I would have to put her in the special ed class-actually I was geared up to do so. But, they are going to pull her out for longer than they have been (she's only been getting 55 minutes per day) and work with her. They can pull her out up to 3 hours per school day before she is considered qualified for Special ed. I am going with the flow. I meet with the teacher and others next week to put that plan in place so that next school year we are good to go.

Homework is a real problem too-I need to talk to them about adding some extra time for her homework too. I already told the teacher I will not work on it with her if it causes us (her and us) extra anxiety. Sometimes its a fight to get her to do it , so some extra time would be helpful.

I have been so grateful for the support I have gotten from wonderful friends during this awful last couple of months. I now feel like things are looking up. Trying not to get too excited though-I have learned my lesson, because it never seems to last long :(

Have to vent-Angry, Upset, etc

I just have to vent, to get something off my chest.

First off, let me tell you what really sent me flying. It was recently suggested that I "attend a parenting class" or that I should "pick up Parent's magazine" and read it for advice.

Well, Parents magazine does not offer advice on parenting a "special needs" child. Strategies that work for "normal" children just do not work for these kids. You need to use special tactics with these kids. They are just not wired like other kids.

And Parenting classes? What the hell good is that going to do? Those again, are for NORMAL kids. I have yet to see a parenting class for a kid with special needs.

Bottom line, I am HURT. Deeply hurt. This came from a long time friend. Even though I don't think her intentions were bad, it does not change the fact that I was hurt. I think I have heard it all now. Apparently its not okay to be overwhelmed. Its a normal reaction to having to raise a special needs child. Its overwhelming, and ever changing. One day to the next is never the same. One day something may work, or even a week or two, then that changes.
Then we have to figure out something else that works-that can take time and much frustration.
Its all trial and error. We feel like we are walking on eggshells alot around here.

Here is an example I found online that kind of sums it up:

"The mother of this child was so upset and frustrated that she didn’t know where to turn, and was so overwhelmed by it all that she was in tears and at the end of her tether."

That is how I feel some days. Honestly! If anyone lived like this they would too, I promise you that! Its NORMAL, Dammit!


But its not the first time someone has said something like that to me. I have also been told I should be put on antidepressants (just a short time ago, when I was waiting to see if Gillian was having seizures). Now what the hell is that going to achieve? Do you honestly think that would change the situation? NO. Absolutely not.

I will be honest, I tend to withdraw a little now and again, when things are not going well.
That is my way of coping, and there is nothing wrong with that. I think we all handle things differently. Sometimes I just need time to think, to reflect, and to try to solve what is happening. I also don't like to go out and smile if I don't mean it. I am not a good faker, so I figure whats the use faking it. Doesn't mean I am giving up (which I have also been told I am doing).

I can tell you, this is VERY difficult to live with. The good days are REALLY good. Sometimes they go for a few days or a few weeks or a few months. The bad days are REALLY bad. Again-these can last a few days to a few months. My own mom stayed here for 3 weeks and she got a taste of what I deal with every day. She could not believe it. I have to say, its been worse now than when she was here.
Its hard for someone with perfect kids to understand how hard it is to live with this day to day. Some days, its honestly hard to find something to be happy about, in the midst of this crap.
I may be happy about some things, but its so hard for me to smile on the bad days, especially when things have been bad for a while.

Things are hard right now. I don't know how to help my daughter. I worry about her future.
I wonder what will come next. For people who don't live with her and probably don't see a tantrum episode or other things out of her probably think "How hard can she be?" I guess the saying is true when they say "Walk a mile in my shoes."

Everything with Gillian right now is hard and often takes alot of fighting with her. Getting her up on time to go to school. Getting her to take her meds. Getting her to get dressed. Getting her to comb her hair and brush her teeth. Then she is off to school. The school calls VERY frequently about EVERY little thing. Then we get her home. Gotta fight to take her pills again. Homework time. Its like fighting tooth and nail to get her to do anything. And dinner-very hard to get her to eat. That also is a fight.
Bedtime does not always come easy either.

Now you tell me, would you be smiling if you had to deal with that every day? I think not.

So We Thought.......Yeah Right.

I am just venting here, I don't know what else to do.
Here we sit, on the 2nd anti-seizure medication. Last week
I was hopeful, I saw some positive change. This weekend, she
has started acting up again. EXTRA hyper, Impulsive, refuses to eat (that is bad, since she takes 10 pills a day). I am throwing my arms up in the air. I don't know what to do.
I want them to figure out if this is the seizures, or if its behavior or both. I wish they would just hospitalize her so they can do some more tests to determine this (there is a way) and be able to actually see how she is. Then maybe they can try another medication on her and see how she does. I am so frustrated. I just want her to be able to function, and I want a sane house!
Its not that way right now by any means. She is saying "I don't like mommy" and that kills me inside. She said that today in front of quite a few people (talk about embarrassing). If she only understood how I agonize over her each minute of the day, how much I do for her each day to make sure she has all the care she needs, trying to do all I can to make her happy,etc. I know she is young and just doesn't get it. But, that does not change the fact that it made me feel like crap and that it hurt. I just want my girl back!
I am a bit panicked, as my husband is leaving to go out of state in a couple weeks and lord knows how I am going to handle her then. For all I know we may both end up in the hospital!

Age 7-more new challenges and yet another diagnosis.

Here we are now, at age 7. Gillian repeated First grade. Luckily all the first grade teachers knew Gillian from last year. This year she got another wonderful teacher and has had her teacher from last year for part of the school day too. This year has not been so great. The first couple weeks of the school year were brutal. She was literally bouncing off walls-almost like she was trying to crawl out of her own skin. They had her on Prozac for her OCD and apparently that did not agree with her. It turned her into a different child! I noticed it a bit at home but once she started school we saw alot more. So we stopped it and noticed a change for the better. We began another medication and she was doing well. They are moving ahead quickly and Gillian is falling behind. It all started around December. She was doing good-had her IEP meeting and she was a little behind but not too bad-at that point we were not worried. She started wetting her pants. I attributed that to the ADHD and her attention. Thinking maybe she was waiting too long to get to the bathroom. Then come January, after winter break, she kept falling asleep in class. I was upset thinking something was wrong. It kept up so I got her in to see a doctor. They ran bloodwork and it all came back just fine. We were baffled. She had started being extra nervous-picking her fingers till they were bleeding. Her behavior became worse-more tantrums than normal. I thought she needed an increase in her ADHD medication so I phoned the doctor. They upped it and I was hopeful. No change!
Then came her Parent Teacher conference. She had fallen very behind. At that point I was very concerned. That same week I was called to bring her a change of clothes as she had wet her pants. Uh oh, I thought. It was really rough-between her behavior and the wetting her pants and now school, there was something going on. Again , not sure. It was a rough weekend following that and out of desperation I emailed the nurse practitioner at the Neurology office. As I was laying around the house trying to calm myself after a stressful Saturday I remembered I had some emails back and forth at one time with her and thought I would give it a try. I heard back not even 5 minutes after I sent the email (on a Saturday Night!). She apparently was not working in the office much, but forwarded it straight to the nurse. They called me on Monday but I missed the call. Doctor wanted to see us on Wednesday. So I went in and talked to the doctor and told her all that had been going on. She asked me up front if Gillian had been having seizures. I thought to myself "What is this lady thinking?" I had not seen Gillian have a seizure. That was just crazy.
Then she asked if I had ever seen her zone out. I told her we see that alot. She then said she could be having them-that there is a kind where they don't convulse but they stare off into space. Ah-hah! I remembered. I had read about those at one point. So the EEG was ordered. From what friends have told me and what I have read, those are hard to detect in an EEG. I was not optimistic they would catch one, and still in disbelief. When it came time to do it, I was excited to get it over and done with. I hoped they would find something, assuming we would be able to take care of it. Within about 2 minutes of starting the test, they detected one. I saw it with my own eyes and was FLOORED. I saw it on the screen and immediately asked the tech what that was. He told me that it was possibly what they were looking for. He then went to a couple of screens and turned back and confimed it WAS a SEIZURE. At first I was relieved they found it. As it went along and I saw more (she had 3-4 seizures during the 30 minute test), I started crying. What was I to think? It all became very clear. The zoning out, the falling, the sleepiness she had had, the forgetting what she learned while doing homework-all classic signs. I had no idea. I felt like kicking myself. Often we cannot tell she is even having them. One indication is when she wets herself. Sometimes she does stop mid-sentence. When we are doing homework and 2 minutes later we go back to something and she doesn't remember-we know she had one. Her eyes don't move and she doesn't even twitch. This has by far been the hardest on me. I thought I would feel better knowing, but it has been harder. Seeing her have these has been hard. Just knowing that seizure activity is happening. Knowing it is causing her delay. At this point, there is a chance she could grow out of all this. But there is a chance it could also get worse. We are on a path to find the right medication now. The first one caused her to be aggressive. She was throwing punches at me and doing things that could hurt other children at school. Its just not my Gillian. Now we will probably have to start another medication. That is hard, the not knowing.
I just want her to do her best in school. I know she has it in her. She is smart. But this monster thing is causing her issues. I HATE this. I hate the word Epilepsy. In a million years I never thought that she would have this. I feel horrible that she has had to struggle her entire life. I wish I could just take it all away. Since she has started school she has been given several diagnoses. Some I knew there was a possibility of, and others that just totally came out of nowhere. It makes me wish that when they had sent her home from the NICU that they gave us some kind of manual, or a book that would give us some insight as to what we may be dealing with later on , hence this blog. It was all so unknown. It makes me wonder what is going to be next for her, and I worry about that. At the same time, I realize we are so lucky to have her. I have alot of different emotions running through me right now. Bottom line is, I worry about her and her future. I know she has her purpose and I always wonder what that is. I see how strong she is , so she has a reason for being here. She never gives up. Even after all she's been through, she keeps going. Overall she is very happy-she always has been. I think she is pretty amazing.

Age 5-6 Kindergarten & First Grade

So she began Kindergarten. I have to admit I was so nervous, but excited at the same time. I heard wonderful things about this teacher and her expertise. She has 5 special needs kids of her very own. She is an amazing lady. On the first day of school, it was rough. Gillian freaked out. They could not get her under control. It was hard to watch it all. I stayed to see if I could get her to calm down, but I finally just had to leave and go out in the hall. I stood out there and cried. I just wanted her to be normal. Gillian was excited until we got there. She was never good in new environments and with different people. I figured it was just an adjustment period. She kept hiding under tables and such. Eventually she stopped that . I tried to volunteer in the class, but she acted worse when I was there. The teacher , again, was amazing. During the school year she surprised me that they were teaching Gillian to read. I could not believe it. One time though, during the latter part of the school year the teacher told me I needed to have her eyes checked, as she was not seeing the words. She told me I needed to put her glasses back on. Trouble was, they were broken! So I creatively fixed them until we got her to see her Opthamologist. I was thinking that she would need a new prescription because it had been a while. Imagine my surprise when the doctor concluded her exam to tell me that Gillian had 20/20 vision! She had been fooling us. She can be a stinker, thats for sure. She had been called on one day during class, and Gillian would not answer. There had been times when we would work on homework and she acted like she did not know I was talking about. I simply thought it was the ADHD again. I didn't give it much thought. She was learning to write her letters and numbers. I thought she was doing quite well, and on paper, she was.

Then the worry set in again. She was to go to another school, and ALL DAY. She would be put in a special ed class-I knew nothing about the teacher or how the class worked. It had several grades in there. I was getting use to the idea, then the school decided to make changes again. I was told Gilly would NOT be put in that class. Instead, she would go to her "home" school. She would be mainstreamed. OMG! So many questions! How would she get lunch-would she get help? How would they manage her if she started a tantrum? Would they give her a detention? I worried about her being disruptive. She was going to be put in a Class for 1st graders-ones who were academically in between kindergarten and first grade. That worked for me. I knew the teacher, Mrs Williams and was excited about Gilly having her for a teacher. She had been a kindergarten teacher at the school when my son was in kindergarten several years back. It helped to know she would go into a class where I knew the teacher. She is great. Gillian did pretty well but was not without her challenges. At first they didn't think they would be able to use the same discipline on her as the other kids, but it ended up working out. She developed OCD (Obsessive Compulsive Disorder) during that school year. Yes, another challenge. It was hard again, to be trying different drugs on her. We tried several and at first it seemed to help, but not completely. By the end of the school year, she was behind a bit, but they decided to hold her back so we really did not worry much about it. I worked with her through the summer on things to make sure she would remember what she learned. I always worry about her forgetting things. I was noticing some things she would forget but just wrote it off as her ADHD. Its so hard to tell.

Age Four-Things coming out of the woodwork

At age four it was the same as age 3, very hyper-just didn't slow down. Was making some progress in the speech area, but not too much in the other areas. Again, I was concerned.

She had many "sensory" issues. Examples are: touching certain things, certain textures she didn't eat, not liking to be hugged, etc. After much research I thought that was Sensory Integration Dysfunction. I had talked to our Speech Therapist, who has a son with special needs and had Sensory Integration Dysfunction also, and they had alot of the same symptoms. Finally after reading so much about it, I decided to make an appointment with a Neurologist. It took several months to be able to get in to see one. So, while waiting, I made up a list of things I was concerned about to prepare for that first visit. I had no idea what I was in for. In the meantime also, the preschool was setting up a "County" class for those children that needed extra help. There were several that just needed that support. Gillian was one of them. We were getting her ready for that class. At the meeting to transition her to that class, it was brought up how hyperactive she was and they gave me some information to take to our Neurologist visit. They basically told me I should look into medicating her. I started to cry, as I really did not want to do that and those medications truly scared me. It was also mentioned that she "zoned out" alot. I didn't read too much into that comment-but years later now I probably should have. She also fell alot, and of course was learning delayed.

So she began the special preschool class and it was great-the staff was well trained and it was the perfect environment for her.

At the first Neurology visit it was daunting. I presented the information I had prepared. I went there pretty much to get her a diagnosis of Sensory Integration Dysfunction and to try to get her some Occupational Therapy . Never would I guess what would happen next. First, the Nurse practitioner and doctor convinced me to try her on some ADHD medication. Something mild. It was hard but I decided to try. Then, they talked to be about Autism. I lost it. It was not what I imagined to hear. We did a CARS test (Childhood Autism Rating Scale) and she scored very high, meaning she had Autism. That was one of the hardest things I have ever heard. With support of some friends and the wonderful Preschool teacher she had, I got through it. I was convinced she was high functioning and had a bright future ahead. She quickly responded to her medication and did very well. We also got her some Occupational Therapy as well as more speech therapy through Loma Linda University Medical Center. She attended Occupational therapy for close to a year-it helped in alot of ways. I am sure she will need more in the future, though.

The next year she would be attending Kindergarten. I was so nervous, since she was behind academically. I thought it would be fitting if she stayed in preschool just one more year. If not , I was going to keep her at home a year. But there was talk of a special education Kindergarten class. Still, I was nervous.

Entering Preschool

It was exciting at the prospect of Gillian turning 3 and being able to attend preschool. It was also bittersweet, having to let her go and be away for a few hours each day. We thought it would be smooth sailing there on out.

So we get to the first day of preschool. As soon as we walked in the door and saw the other kids and she began walking around the room playing, I saw a difference. I saw a difference between her and the other kids. She acted more immature than the others. She was smaller than the others. She had a hard time. She could not sit still. I knew something was wrong. We also could tell her speech was largely delayed compared to what it should have been. So that same week I got in contact with the school's speech therapist. They did an IEP and got her set up for speech.

It helped, but there was still issues I could not quite put my finger on. The school district psychologist said she wondered why she was ever discharged from Inland Regional Center.

When they discharged her at 2 1/2, she was still a teeny bit delayed, but nothing big. When she hit age 3, it put her in another bracket, and so she showed severely delayed. We thought once she got some speech in and matured she would be fine-no worries. It was tiring and stressful-and she ran around like mad. She never stopped. At that point I thought she would be too young to medicate if she had ADHD or anything, so we never sought anything for that. So we dealt with it as best as we could, tiredness and all.

Age Two-first steps

Gillian finally began walking at age 2. We thought it would never come! We were getting worried. She does everything on her own time. It may take forever but it always happens.

At her Opthamology appointment, Her eyesight had improved! Doctor said that NEVER happens to these small preemies. So, onto glasses #2. Not that she wore her first pair much-couldn't get her to keep them on. That made it even more amazing that her eyesight had improved.

We were trying to get her to eat more solids-like little finger foods, and to drink from a sippy cup. She had "oral aversion" so it made it a challenge. We just kept at it. She finally was able to drink out of the sippy cup after much effort.

She still had her caseworker from Inland Regional Center coming and working on her developmental goals. She kept progressing then she was pretty much caught up. At just over 2 1/2 years old, she was exited from the program. We were told we could put her in preschool and all would be well. Little did we know what was ahead.

Finally getting some normalcy

As things went along we started getting on a better routine, more normalcy. We took Gillian out of the house to get some pictures taken. She also needed her first pair of glasses at 8 months old. The opthamologist told us she would probably need glasses all her life.

A few months later we made the 1 year mark. What a joyous day that was. She slept almost the whole time-we had a party for her at the park.

Once we hit the year mark, we thought we were home free. We thought it was all uphill.

She was not walking yet-just barely sitting up at that point. We knew with help she would keep developing more and more.

At age one, we had a BAER hearing test. Her hearing was within normal range! I wanted to hug that doctor! My baby could hear normally!!