New Treatment and the Question of More Children

I posted a while back about starting methyl-B12 shots on Sam. We have to get them from a compounding pharmacy ($$$) and give them every other night. The first round went alright. I gave them to Sam after he went to sleep. He would wake briefly with a cry of indignation but them he would go right back to sleep. I noticed that he seemed to sleep better when he got the shots but there didn't seem to be any other effects. I was ready to quit them because of the cost. The doctor talked me into another round. We paired the second round with and addition of folinic acid to Sam's vitamin routine. That week, I got notes from he teacher about how much better his focus seemed. I don't know if that is really enough to draw a conclusion but I think we will continue for a while longer.

Our newest treatment is a series of Homeopathic formulations. The company that makes them is called Guna and Sam gets drops from 6 different bottles a few times a day. We just started so I don't have any clear results. Sam HAS seemmed more focused and social this weke but he is recovering from H1N1 so he might just be tired and in need of some comfort. The jury is still out on this one.

Now to the question so many parents of autistic children agonize over: Should we have more children knowing that there is an increased chance of having a child with developmental delays?

I have always wanted a big family. I always imagined having 4 or 5 children. It never occured to me that I might not be able to. I was never set on having biological children and infact I always envisioned a family of bio and adopted kids). I have been lucky enough have gotten pregnant very easily both times but I was ready to adopt right away if that had not been the case. Now that Maya is becoming more indepedent and seems to be on a normal developmental track, do we roll the dice again? do we look into adoption? International? Foster care?

Mark seems inclined to try again for another biological child. He is not against adopting but he resents the invasiveness of the process (he understands why it must be so but he doesn't look forward to it). He has always been interested in adoption (our niece is adopted) as well but the paperwork puts him off since his work schedule is already so busy. He also doesn't want to commit to an expensive international adotpion which could be a hardship for our current children. He is actually more open to the idea of adopting from foster car if we got that route..

I loved (and hated at times) being pregnant and part of me wants to jump at the chance to go through it again. Another part of me wants to throw our urge for another child into the adoption process. We have had a few conversations about it and we have not resolved the issue. I think we both agree that we want one more (after that we will see) and that we will wait 6 months to a year before we go for it. In the meantime, I am going to research foster-care adoption so we can discuss the facts. I work with someone who did this recently and I am going to try to schedule some talk time with him and his wife.

To all of you out there with children on the spectrum: What decision did you make about having more kids? What factored into your decision?

Sam was too sick to trick-or-treat (not that he knew what he was missing) but not too sick for a lollipop.

I wasn't going to dress Maya up (I was feeling cheap) but I found a hand-me-down costume in the attic and I am glad I did. She had a great time beeing a bumble bee.

H1N1 and Sam

Poor Sam is getting over the H1N1 flu. He started to come down with symptoms on Thursday afternoon and by Friday morning he had a fever of nearly 104. He had the nasal swab test (yuck) at the doctor's office and it came back positive. He went right on meds and he seemed to respond well. He was tired all weekend and he had some trouble sleeping but other than that, it wasn't too bad. He stayed home Monday to be safe and he didn't have school today. He goes back tomorrow. I know it can be serious for some but for him, it was ok - not fun, but ok.

Jackets Again

Apparently, the answer to the jacket problem is M&Ms.

Jackets

Sam has decided that he doesn't want to wear jackets or sweatshirts that can function as jackets. As soon as he sees one coming at him he flips out. If I put it on him, he flips out more - screaming, kicking, throwing things, crying - and won't stop until it is gone. He reacts in a similar fashion to new shoes. He also gets out of sorts changing from pants to shorts or short to pants as the seasons change. But, the pants/shorts and shoes issue usually passes quicklywhen he realizes he isn't getting his way. The jacket thing don't seem to be going away. Interestingly, he doesn't mind long sleeve shirts. It is fun.

Little things are so much more complicated

When you have a child with special needs, little things are so much more complicated. You can't just go to watch the high school football game or take a trip to the park without seriously scouting the layout first. You can't just get a babysitter and take a night out (assuming there is any money to go out or get a babysitter). My husband and I went into a panic tonight because he has to leave very early Friday morning for a seminar. It is my husband's job to get Sam up and put him on the bus in the morning. What to do??? If he were typical we could send him to a neighbor or something like that. You just never know what he will get into in a new house. My fear is he could potentially spend and hour jumping on and off their lovely coffee table. Once he is addicted to a behavior, he can't stop himself. Luckily, there is a girl in his class who lives nearby. She is much higher functioning but her mom "gets" the disorder. I am still worried that Sam will give her hell for the 45 minutes he will be there but we are up against a wall here. I can't take the day off because this is the first week of school.

Back to School

In 2 days, Sam goes back to school. I am very pleased with how the home ABA and Parent Training went this summer and I will fight to repeat this schedule next August. Sam will have a new teacher this year and I know nothing about her. I am preparing to write her a lengthy note (I know, I know) because I have a couple of concerns about Sam's transition back to school.

1 - When Sam left school he was on a 40 minute potty training schedule (meaning every 40 minutes a timer went off and he was taken to the toilet). At home now he is fully potty trained and if I try to make him go when he doesn't need to, he gets frustrated. He takes himself every 2-3 hours. I want to make sure they will respect the progress he has made and not fall back on data that is left over from July. The program is SOOOO data driven - for everything- and it frustrates Sam sometimes.

2 - Sam has made a lot of progress verbally. Prompted, he can say "I want ________". He is tought to understand but he is using more words. After carefully reviewing his last progress report I noticed that ALL Sam's expressive programs are for PECS. There are no programs that work on his speech. His speech therapy does a little but it is really only his private speech therapy that make him work to produce sounds. I want to request that they push him to speak a little more and back off on PECS a little. I don't want to get rid of PECS since he may never be fully verbal but I would like to push the verbals kills since he is trying so hard.

Maya will go see the babysitter this week. I wonder if she will remember? The last time she was there she couldn't quite walk and now she runs.

I will be heading back to work next week. It is always a mix of emotions for me when I go back. I am lucky that I like what I do but I miss being home with my baby. I always thought I would be home until my kids started school but finances haven't allowed that possibility.

Our Current Treatment Plan

I are trying a variety of approaches with Sam. Autism treatment has become a real money maker and so I try to approach each option with healthy skepticism.

Sam attends an ABA based pre-school for autistic children. Every child has a well-trained aide and the aides rotate evey 2 weeks. It is a public school program and I know we are lucky to have such a program in our area. During the school year he attends from 9 - 2:45. In July he attends the ESY program at his school from 9-1. It is a little too "campish" for me but the staff are all his regular teachers/aides and he enjoys it. Last year Sam had nothing in August and it was terrible. This year I fought for August services and we have 20 hours of ABA at home and 16 hours of parent training. It works out that Sam has 2 hours of contact with a therapist almost every day this month and it is working otu really well.

I also take Sam for private speech therapy once a week with a woman who does PROMPT. SHe is wonderful and get great things out of him.

We are also tyring biomedical therapies. Dietary interventions proved useless for Sam. He never really had digestive issues so it didn't surprise me that his gut didsn't seem to be a major factor in his autistic behaviors. My personal opinion is that gf/cf and other diet programs are worth a try for anyone with digestive problems but those gut issues are not just an autism thing.

Our biomedical plan also includes various vitamins and supplements. Sam takes a vitamin/mineral supplement made by Kirkman Labs. I didn't like their super nu thera vitamins but their kids multivitamin/mineral capsules have been good. Sam also takes the following in addition to that:
-extra vitamin D (his bloodwork showed he was deficient)
-probiotics
-prebiotics
-digestive enzymes (not sure this is doing anything but it doesn't hurt)
-DHA/fish oil

I saw the greatest improvement when I added the vitamin D and then again when we added the EPO.

Later this week, Sam will get his first B12 shot. Cross your fingers!

All of these supplements were recommended by a qualified doctor.
-Evening Primrose Oil