Being a mom is the best thing ever! It is also the hardest thing I have ever done and now with Michael way out of my comfort zone and understanding. Before I had kids I always thought I knew what it would be like and thought I prepared myself for what was to come. I was so not ready for everything that Michael has thrown at us. I still feel very blessed every day to be at home with both of my kids and be the primary person raising them. We have had to make a lot of sacrifices to make that happen but both Ken and I think that it is important for our kids and even more important now that Michael will need a lot more help in his early years than most kids. So all in all it is worth it to be with the kids all the time.
With all this stuff happening with Michael over the past 2 years I have felt very alone during most of it because almost everyone thought I was pushing to hard to get him help. Then with all his health problems it is overwhelming to me to even think about. I have had to make some very hard decisions for the past 2 years and there are many more to come.
1. His pediatrician wants to do biopsies of his tummy and intestines to check on a few things but his new GI doctor is blaming all his GI issues on his A.S.D diagnosis (which I have never heard of until he told me)! So I started doing research and now I am not sure who to listen too! I really don't like his GI doctor and really trust his pediatrician but she has not worked with a lot of A.S.D kids. So that is one thing I have to decide on.
2. His new GI doctor wants me to put him back on all dairy products because he thinks Michael has out grown his protein intolerance. So we tried it Friday and Saturday and the poor kid has had a tummy ache and gas and diarrhea like crazy. Today was the first day he has had no runny poop. So now he wants us to try lactate milk products!
3. Then a week from Friday he has his O.T. evaluation from Kaiser. It takes about 2 hours and I know that they will denial him which is fine but the San Andreas Regional Center wont provide O.T. for him until they get the denial letter from Kaiser and then after that they will do their own evaluation as well. I hate having him to though all this it wheres him out so fast.
4. Michael has a very limited diet and I have many people telling me what to do because at 2 years old there is a very good chance they will not continue to cover his formula. I should mention that one can cost 42.00 and he goes through a can every 3 or 4 days! so that is 2 cans a week and 8 cans a month which is more than we can afford. So I am freaking out about that and trying to find stuff he will eat that will make up for the calories and nutrition in his formula. I am taking a class at Parents Helping Parents (a nonprofit for families that help kids with special needs) for S.P.D and eating issues next week on Thursday and I am hoping I will learn a few things.
5. ABA therapy has started and it is going to take him and the family a long time to adjust to this. Right now we are starting at 15 hours a week but they want to increase it to 25 hours a week in about 2 weeks. I don't think that he will be able to handle that much so I have a meeting scheduled in Monday the 24th so we will see.
But there have been a few good things in the past few weeks he has been calling me mommy and it is the best thing ever. He knows who I am and that I have a name! It is so good to see him make the connection finally. He now knows 6 body parts: eyes, ears, noise, tummy, feet, and fingers. He can't say them but he knows where they are! We are working on animals now and he seems to really like the noises they make. He is fixated on horses though so I may have to get a few plastic/rubber ones for him to play with. He can moo, baa, neigh, bow wow, and kinda quack. again I never thought this was going to happen but he is finally getting it.We are slowly starting to use P.E.C. (picture exchange communication) he still does not understand it but I am hoping it will come to him soon.
1. His pediatrician wants to do biopsies of his tummy and intestines to check on a few things but his new GI doctor is blaming all his GI issues on his A.S.D diagnosis (which I have never heard of until he told me)! So I started doing research and now I am not sure who to listen too! I really don't like his GI doctor and really trust his pediatrician but she has not worked with a lot of A.S.D kids. So that is one thing I have to decide on.
2. His new GI doctor wants me to put him back on all dairy products because he thinks Michael has out grown his protein intolerance. So we tried it Friday and Saturday and the poor kid has had a tummy ache and gas and diarrhea like crazy. Today was the first day he has had no runny poop. So now he wants us to try lactate milk products!
3. Then a week from Friday he has his O.T. evaluation from Kaiser. It takes about 2 hours and I know that they will denial him which is fine but the San Andreas Regional Center wont provide O.T. for him until they get the denial letter from Kaiser and then after that they will do their own evaluation as well. I hate having him to though all this it wheres him out so fast.
4. Michael has a very limited diet and I have many people telling me what to do because at 2 years old there is a very good chance they will not continue to cover his formula. I should mention that one can cost 42.00 and he goes through a can every 3 or 4 days! so that is 2 cans a week and 8 cans a month which is more than we can afford. So I am freaking out about that and trying to find stuff he will eat that will make up for the calories and nutrition in his formula. I am taking a class at Parents Helping Parents (a nonprofit for families that help kids with special needs) for S.P.D and eating issues next week on Thursday and I am hoping I will learn a few things.
5. ABA therapy has started and it is going to take him and the family a long time to adjust to this. Right now we are starting at 15 hours a week but they want to increase it to 25 hours a week in about 2 weeks. I don't think that he will be able to handle that much so I have a meeting scheduled in Monday the 24th so we will see.
But there have been a few good things in the past few weeks he has been calling me mommy and it is the best thing ever. He knows who I am and that I have a name! It is so good to see him make the connection finally. He now knows 6 body parts: eyes, ears, noise, tummy, feet, and fingers. He can't say them but he knows where they are! We are working on animals now and he seems to really like the noises they make. He is fixated on horses though so I may have to get a few plastic/rubber ones for him to play with. He can moo, baa, neigh, bow wow, and kinda quack. again I never thought this was going to happen but he is finally getting it.We are slowly starting to use P.E.C. (picture exchange communication) he still does not understand it but I am hoping it will come to him soon.
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