I believe the expression is, "I'm so mad I could spit fire." Well, these people obviously do not know that my dad nicknamed me "spitfire" when I was a kid and I probably could right now. I'll give you a little back story for those who have been hiding under a rock somewhere and do not know what has been going on with Carson. :)
Carson is now four years old, but has the vocabulary of a two year old. He also has very bad eczema. I had him evaluated last year and by the time they were ready to start therapy, it was time for school to be out. So, we were able to start at the beginning of this year. I also registered him for Head Start last year and he started in August. He has a speech and language therapist and a developmental therapist that come to Head Start for his therapy during his school day. He also received occupational therapy which I take him to after school three days a week.
When Carson was a baby we (myself and his pediatrician) thought he had an allergy to milk. She did a blood test that was negative, but wanted to keep him off of milk anyway because of his skin. We changed him to soy and he still had issues so we changed him to Nutramagen formula, which is expensive, but it seemed to be better.
Then when Carson was two years old, and old enough for allergy testing, his pediatrician sent us to an allergy doctor. He was tested and it did not show any allergies, so we went back to normal and let him have milk. He stayed behind in development and speech. His eczema seemed to get worse with the more he had. She prescribed creams, ointments and oral medications to try and help. Nothing seemed to help, so I decided to take him back off milk. His skin started clearing up and he had a burst in his vocabulary. Around this same time he fell and broke his arm, but I kept him off milk anyway. His arm healed and now if you put milk in front of him, he won't even loot at it.
While all of this is happening my sister Patty, who has a nine year old daughter Hannah with autism, had taken Hannah in to be tested by a specialist. They don't just test for allergies they test for sensitivities. Hannah has a sensitivity to Caisson and Gluten, among other things. She has recently had her son Joshua, who was diagnosed ADHD, and he also has a Caisson sensitivity. I knew it would not be to far fetched for Carson and/or Courtney to have these same issues.
Carson's skin remained irritated even after taking him off of milk and he would itch and scratch to the point he would draw blood. He has ended up with a staff infection because he was itching so bad. I took him back to the doctor to be seem when he had his latest flair up hoping it would not turn in to an infection. While I was at the doctor with Carson, I told his pediatrician about my niece and nephew having a sensitivity to milk, she recommended having a blood test done to see if it would show an allergy this time. She said if it did not she would send me to a clinic at Childrens Hospital for further testing. It took about a week, but the results came back that Carson indeed has an allergy to milk, egg and peanuts. I was shocked by the results. I was just expecting milk, maybe, but not egg and peanuts. This brings us to the situation we are having now.
Head Start requires that each child be served the same meal. I took them the information they requested when I informed them of Carson's allergies. I picked him up yesterday and was informed by the Teacher's Aid that Carson refused to eat his macaroni and cheese with his fork and had made a mess on the table instead of doing what he was asked. I told her that this is unacceptable behavior and I would talk with him. Then I asked her why he had been given the macaroni and cheese considering he has an allergy to milk and egg. The look on her face said it all for me, "Oh Crap!" She said she had seen he had the allergy, but thought it just meant the actual item itself and not items containing the product. I told her it including everything containing the product. She said ok and apologized for the infraction. I then went to get Carson from outside and saw the director of the school. I told her about it and asked that she make sure that the staff knows of his allergies and that he is not given anything with these products. She immediately looked Carson over and made sure he was not swollen or broke out with anything, which I thought was great. I go to pick him up today and the director ask me to come to the phone and talk to the nutritionist. I get on the phone and from the start the lady was just down right rude. I remained calm, although I wanted to go through the phone on this lady and revert to my previous self, but jail does not sound appealing to me.
I stayed on the phone for fifteen minutes listening to this rude lady, holding my tongue of course, while she questioned me about how I have changed Carson's diet to accommodate his allergies. I told her we have given him soy milk, which he refused, Colonial bread, because it does not contain milk, and soy nut butter in place of peanut butter as instructed by his pediatrician. She said she would need a copy of the test results to see the severity of the allergies and that since it was done by the pediatrician clinic and not an allergist that it is really just an opinion. Ok, so when exactly did this lady get her medical degree? Oh, that's right, she didn't. She went on to tell me that if we could not come up with a compromise that we would have to do something else. I said "So, do you mean I would need to provide his food or he would not be allowed to come to school?" She answered "He would not be allowed to continue at the school because we can not cater to one child this way. It is Head Starts policy that each child must be seated and served the same meal. The children that have allergies are given a similar same looking replacement, but in Carson's case we could not do that. For example, children who are allergic to peanuts are given a cheese sandwich instead, but since Carson is allergic to both milk and peanuts we could not do that. Also if we are having a type of noodles that contain egg we would still give it to him depending on the severity of the allergy." I just about lost it. I was so mad I was on the verge of tears. Then she asked "Would you have a problem providing the Colonial bread and soy nut butter for him to have?" I answered "No, I have no problem providing those as a replacement." All of the sudden, she said "Well, I need to talk to Ms. Ashley, the director, she will have something for you to sign tomorrow stating that you agree to provide the Colonial bread and soy nut butter." All I could do was walk back to Ms. Ashley and hand her the phone.
I wanted to kick and scream, but instead I am researching the Children with Disabilities Act. I also talked to his occupational therapist today who told me they can't refuse service to him because of this Act and she didn't blame me for being mad. I'm sure she will help me, if I need it to get in touch with the right people to make sure I have all my ducks in a row because I let them have it. I also spoke to my sister Patty. I think she was about as shocked as I was by the conversation I had with the nutritionist. I'm sure Dr. Miers will love hearing that a nutritionist thinks she merely writes opinions on prescription pads instead of actual diagnosis's. I plan to call her tomorrow, plus both kids have appointment coming up in November, so I'm sure we will be able to talk about it at the appointments as well.
So, here's to research and fighting for not just my child, but for the others that are being singled out for things that are out of our control.
- Michelle Bettis
- I am a daughter, a sister, a wife, a mother and Independent Consultant for Lindt Chocolate R.S.V.P. I have become an avid reader in the past few years and have even started writing my own stories. The stories I write may not go any further than my own living room, but you never know unless you try.