Kids are kids

Parenting stinks, no matter what. Disabilities or not. I have one of each, my daughter is totally normal. She really frustrates me. She's five years old though, she isn't going to think and act like an adult. There are times when I can't decide who is harder to parent. They are both SO tough.

Lately, I'm realizing that Andy's disability isn't always to blame when times are tough. He's just a kid, and he is going to have bad days and act up, just like other kids. So back to, parenting just stinks. I need more time each week, when I don't have to parent my kids. I'm finally starting to get it.

I've been able to leave my son at school, now that he knows everyone, and everyone has gotten to know him. I first started by leaving him there for the first hour alone, and noticing that he was quite happy when I returned. He was in a good mood, and hadn't been crying. We hit a turning point last week, when I would start to feed him his snack at school, he would start crying and lose it. It seemed like he was trying to tell me, "just take me home, I'm tired".

So, I asked the teacher if they could feed him snack, and see if he freaks out. They've done it twice now, and he's fine. As soon as I come back into the classroom, no matter what time, when he hears my voice he gets whiney and soon cries. If I return a little early, I stay quiet and don't let him see me until it is almost time to take him home. This is working so far.

It gives me time to run errands without kids, or go visit with people. Time that I don't have to be a parent. I do still feel like I should be there checking on Andy, but it just makes things worse. Now that I trust they are doing what I would do with him, and they know about some of his triggers, I feel better about having him there without me.

Feeling better

The sadness patch seems to be over now. I put my mind on the back burner and got all my laundry done, and cleaned up the house. I was able to get everything done while Andy stayed busy playing with my daughter, or watching TV. Now that the house is in order, I feel it will be easier to face the week, and getting the kids ready for school should be easier.

I am happy with my life right now, and accept my current motherhood duties, although I still get sad about the scenario. It doesn't mean I hate it, but I think it is okay to occasionally be down, and just let myself feel the feelings that come to me. I know there are people that have it much worse than me, so I don't want to seem unthankful for everything that I have.

Andy's developmental delays redefine every single situation for all of us. We have the power to choose to be in situations or not to participate in things that we don't feel comfortable with. We have to make things more simple, and I find myself savoring small moments in our lives.

The Good, The Bad and The Ugly

I've been seeing way too much of the ugly lately from Andy, and my daughter! Oh, I am trying so hard to stay sane! My son cried for an hour at school today, then cried all the way home for 40 minutes. It is so mind numbing. I can't even focus on anything else. I'm just trying to keep my sanity here. I kept thinking, "now I understand that song 'I wanna be sedated'". I'd love to be sedated for a few days, just put me out of my misery, my God, I'm hanging on by a string. I couldn't do anything, after putting my son down for his nap, but sit on the couch and fall asleep. Despite all the laundry and cleaning that needs to get done. I need a break, Lord help me! Just WAY too much ugly lately. Enough already, I've had my fair share. Now I can go to bed.

What I'm grateful for

Although I feel that my time spent in the motherhood realm has been unfairly tough, there are some things I am grateful for. I am extremely grateful that Andy takes nice long naps. They really help to get him out of a bad mood, and give me the break I need between morning and afternoon. I am also grateful that he is a really good sleeper at night. He has slept through the night since he was 9 months old (when I stopped nursing). Ever since, he always sleeps 12 hours a night, unless he has a fever and needs medicine. He is also an excellent eater. He will eat anything, and loves food. He has no problem swallowing or chewing, and I am SO grateful.

I am also grateful that he is able to give us smiles and giggles, and can show us affection. It helps us to know that he loves us, and is happy to be with us.

Sample letter for a one-on-one assistant for special needs class

I recently wrote a letter to the special needs director at my son's school. He is in a special needs preschool class. I wouldn't consider it an SXI (severely multiply impaired) room, because all of the children in the classroom are able to walk. Some of the kids can talk. Some of the kids can let you know what they want through gesturing. This center does not have a lot of the equipment my son needs, but I feel they are doing well with my son Andy so far.

The letter I wrote was to request that a one-on-one assistant be hired just for my son during his class time. Feel free to copy this letter and use it for your own child. The special needs director says that she will consider my request, and would like to meet with me this week.

Sample letter to petition your school for a one-on-one assistant for your child:

October 8, 2012

From sender of letter

Mother of Andrew

Address

City, state, zip

Ms. Special needs director

Director of Special Education

address

City, state, zip

Dear Ms. special needs director,

After observing and actively participating with my son Andrew's classroom/XXX teacher's class for six weeks at the XXX School, I feel he needs a one-on-one assistant to help him while at school. The assistant would remain with Andy and aid in his personal safety around the other children, and help him to stand while engaged in activities. Andrew is quite unable to do a whole lot for himself, and lacks protective skills.

Andrew requires assistance getting in and out of his wheelchair, getting in and out of seating for activities, and needs to be fed at snack time. Andrew also needs to be given the opportunity to stand in the classroom for short periods of time. These activities would include standing at activity tables where children explore and scoop through things like rice or corn. Andrew can stand with the assistance of an aid, and needs to be watched so that he doesn’t fall over. Having Andrew stand for small periods of time helps improve his brain functioning and promotes bone density and bone growth.

Furthermore, he needs to be actively watched while playing with other children on the floor to keep the children from stepping on his hands, legs, or climbing on him. He also needs to be monitored, so that he won’t bang his head on the floor, due to falling from seating, or falling backwards from a seated position on the floor, as he lacks protective measures for falling. One of Andrew’s doctors, XXXXX,D.O., suggested my pursuit of a full-time assistant for him at school.

I would like to further add that Andrew’s teacher, XXXXX, and the assistants in the classroom are doing a wonderful job. I do not feel that Andrew would be neglected, but I do feel he needs a lot more assistance than the other children in the classroom do. I am most worried of him being harmed, if a staff member can’t get to him fast enough, when another child may be hurting him accidentally. I have been unable to leave him at school alone, for fear that he will get hurt. I also stay at the school with him, because I would like him to have opportunities to be in standing positions, which would require someone at his full attention that could not assist with other children.

Please consider hiring an assistant to work with Andrew one-on-one while he attends school. Please also let me know if you can think of another solution to this issue. Feel free to contact me at XXX-XXX-XXXX, or by email at XXXXXXX.

Thanks for your consideration,

Amy H

House building progress

The second story of our house is being built. Along with the garage. Right now we are at the 10 week mark. The first several weeks were spent waiting for permits to be pulled, and watching the basement get framed and poured. 

The basement footings were poured at the five week mark. We signed all papers to start the house in mid-July, and the footings were done August 24th. The basement forms were put in and poured September 2nd. This is going to be a walkout basement. We are anxious for the roof to be put on, so that everything won't be getting soaked by fall rains. Fortunately, the weather has been very favorable for building in the last few weeks. 

Rough Patches

We've been suffering through several rough patches with Andy lately. He has a swollen gum around one of his upper molars that I've been treating with Orajel. The dentist says the teeth need time to break through all the way. I've been giving him soft foods, but when it is time to eat, he gets really upset. I may have to consult a third dentist, to ask about his gum. I try to floss in there, but there doesn't seem to be any space to floss due to the crying. 

Gabby can't stand Andy's crying, and neither can I.  She is only five, and quite often feels that Andy is the only one that I care about. In her own words. It sucks. Going through all this truly sucks. 

I try to stay distracted with cleaning and de-cluttering the house in preparation of our move this winter. Andy doesn't entertain himself for long though, and when he gets bored he gets really pissed off. 

I try to tell myself that other parents of normal children have to be going through the same ups and downs as me, but it often seems that we are in more patches of frustration and anger than most.

I need to petition my sons school for more help

I have been staying at my sons school on a daily basis with him. I think the teacher and parapros are doing an excellent job. However, their hands are very full with the twelve children in the class. I still don't feel comfortable leaving him there without me. He easily gets stepped on by the other kids, and has to be picked up and moved when he moves into dangerous situations.

I think I need to write a letter to the school explaining why I feel my son needs a one-on-one paraprofessional in the classroom with him. I've got to get the ball rolling now, so that he can have this type of service for the years to come. My family doctor told me a boy she knew of who was deaf had a parapro with him at school from kindergarten through high school.

Time at home with him has been really bad. He gets miserable quickly if he feels pain, or gets bored. I'm going crazy trying to get him to stop crying. I'm finding myself asking for more breaks from the kids. I don't feel guilty about it either, not anymore...

Stories needed from special needs parents and siblings

Lisa Davis has asked me to share the following post with those of you who are caring for people with "invisible disabilities".  Her email is located below for those wanting to share stories with her:

My name is Lisa Davis and I am currently teaming up with writer and neuroscientist Tricia Bliven Chasinoff to publish a book in the series called Easy to Love But... The first of the series, Easy to Love But Hard to Raise, is already published and out in bookstores and available on-line.

Easy to Love but Hard to Raise is an anthology of personal essays written by parents of children with ADD, ADHD, OCD, PDD, ASDs, SPD, PBD and/or other alphabet soup diagnoses that takes the already difficult job of parenting and adds to the challenge.

Ours is second in the series, and will expand the focus beyond raising children with disabilities.  The current book will address the experiences of children, siblings, spouses, and others who have close relationships with people who have been diagnosed with one of these "invisible disabilities".  We are also interested in hearing first-hand accounts of people who have been living with these disabilities.  While this book will not address parenting, per se, we will be including some stories from parents, specifically parents of adult children with disabilities or parents who have been affected by multiple generations of disabilities (i.e., when both parent AND child are affected). 

We need more stories and we'd love to hear yours!  You can e-mail triciaandlisa@gmail.com for more information.  

Can't find the right school

I just can't leave Andy at school. He is so helpless, and defenseless. He gets upset so easily. All the other kids can step on him, and rip toys out of his hands. He can't do anything about it. I just want to cry all the time. Right now, I am trying to just take him in for services, and stay a little extra for some class interaction with the other students. However, school just doesn't feel right for him. In fact, it feels all wrong.

I feel that I need to gear up, and find better ways to be his teacher at home. It is just hard to find the energy and motivation. I feel exhausted all the time lately. I've visited several programs, and none seem to be the right fit for him. There's no way I'll leave him anywhere. He's like a 6 month old baby, and he's in a room of three-year olds. I'm crying again.