Other Concerns

His diagnosis alone makes him at risk and he may qualify on a behavior assessment tool such as the TABS (Temperament and Atypical Behavior Scale) which you could request that they administer. I would definitely call the resource in your area (940) 322-0771 Ext. 175 and seek an evaluation for your son. It would be helpful if you could have a developmental specialist come and work with your son and family to set up a behavior plan for him and help him begin to learn some boundaries to make him safer, prevent injury and give you some relief.

Just to clarify, the TABS is a testing protocol (testing instrument), not a program. It is sometimes used to determine eligibility for Early Intervention Services. It is a parent report questionnaire dealing with behavior and temperament in young children. Your local program looks like it's called Early Childhood Intervention. Sometimes with rare diagnoses parents's have to be persistent in seeking and finding the kind of help they need, but early intervention is a good place to start. I also found a few articles dealing with the condition which you may have already seen before. I am wondering if there is a support group out there for parents's of children with this disorder, but haven't found any info yet. I think it might be nice if you could speak with another parent such as the ones mentioned in the articles in order to gain some insight and support from each other.

I've often wondered the same thing about support groups. Most of my info that I do have has been straight from theses on the internet. Dr. Marts at Cooks Childrens in Dallas, Tx has done his own set of research because he said that he has seen patients come in with no feeling of pain in their hands, feet etc. but never their entire bodies. It's difficult as a parent to recognize common household objects that can injure a child. I have a five year old and a soon to be four year old as well. I have to constantly get my two year old off of my oldest son for playing too rough. He has incredible strength for a two year old. When he was two weeks old, he was sent to Cooks Childrens in Dallas for "Failure to thrive." They had diagnosed him with being born without a "sucking reflex" which later we had discovered that he has CIPA and he has no hunger pains. Thankful that both my other children have very good eating habits that they have taught him to sit and eat with them at the table. He mimics all the things my two other children do. Now all the things that they have been doing through thier toddler years, I have to correct because it has the "monkey see monkey do" effect on my 2 yr old. one of my biggest concerns about the body temperature thing is that we do live in the state of Texas where temps do reach over the hundred degree marks. We do keep him cool in the summer, but we have made lots of efforts on finding "indoor" activities for the whole family. Its really discouraging trying to find ways around all the things that could injure him...EVERYTHING is potentialy dangerous to him even his own foods.

From what I saw the only support group was in Japan, where they said there were around 200 people with this condition and I could not find a direct link for it. It seems as if fewer than 50 cases were in the USA, which accounts for the lack of information. In my searches, I did find a few more links that may be of interest if you haven't already seen them. I did find this link from the UK that may be of help in perhaps contacting other families dealing with CIPA. And this Blog written by a Mom whose daughter has a similar condition...not sure if you can find contact info for her on there or not. Another article from 2007 here might be helpful.

Breast milk provides children with vitamins, calories and other health benefits. Many older children nurse only at night and nurse much more infrequently than infants. Nursing is a source of comfort and closeness for mothers and children, but again the decision of when to stop nursing is the decision of the mother.

An M.Ed. degree would allow you to work as a developmental specialist in the early intervention field, whether it be in home services or teaching in a preschool program (most preschool require a degree and a teaching certificate). My own bachelor's degree is in Child Psychology and my M.Ed. is specialized in 0-5 Early Intervention from the University of Pittsburgh. You can also work in this field as a pediatric speech therapist, occupational therapist, physical therapist or teacher of the visually impaired or teacher of the hearing impaired. These programs may require a few more years of graduate work, but often the more specialized your degree the easier time you will have finding a job in the field. Pediatric PTs, OT's and speech therapists are very sought after by many companies, often more so than developmental specialists and in most cases PT, OT and SLP positions command a higher salary as well.

Many children with Noonan Syndrome have motor delays such as you have described with your son and will benefit greatly from pediatric physical therapy (also called pediatric physiotherapy). I could not find any specific resources for Belize, but do consult with your son's doctor and see if your son is able to receive physical therapy services. Noonan Syndrome can cause bone and musculature development to be delayed (many people with this syndrome are of short stature) and children can have what is called hypotonia (low muscle tone) which makes it difficult for them to move their body against gravity and leads to developmental delays in attaining motor skills such as rolling, sitting, crawling & walking. Clumsiness and poor coordination are also sometimes present with this diagnosis, and these are all things that a physical therapist can work on with your child. Some, not all children have also been found to have muscle and joint pain which makes movement difficult. Continue to consult with your child's doctor about the best medications and treatments available in your area. Many children will also benefit from speech therapy services as they get closer to the age of two. For specific questions and concerns related to Noonan's Syndrome, you can contact the Noonan Syndrome Support Group.

I realize this is not quite what you are looking for, as your issue is with your children experiencing the transition of having new children in their own home. It would certainly not be unexpected to have your 19 month old act out (with biting, hitting others, etc) as a way of demanding your attention and her own way of protesting the idea that your attention is not always focused on her when other children are at the house. You won't be able to reason with her or explain the situation very effectively to her at that age, but I would suggest ignoring as many attention getting behaviors as possible (except biting or hurting behaviors which must be dealt with right away) and trying to lavish the praise on your daughter when she is doing what is expected of her. Perhaps you can make her a "Mommy's helper" during the day, giving her special chores to do or letting her help with younger children if there are any, so that she continues to feel special and learns that you can interact with the other children and still be her Mommy too. We want her to learn that she is getting your attention for all the positive things she is doing and not only for negative behaviors, so pick your battles as they say. You can keep your language simple, by saying things such as "Mommy is helping Tommy with this picture right now and then I will help you next". You can arrange some turn-taking games or projects that involve all the kids and praise her for sharing and taking turns with the other children. I would also suggest having toys and materials that you use ONLY for day care, so that your children do not have to share their own special toys and materials with the other children, which can also be a source of contention at young ages. You may also want to make your children's own bedrooms off limits to the other kids so your children feel they have some privacy and continue to have places in the house that remain "theirs" that they don't have to share.

You might also want to create a "quiet corner" using a small tent, or tent made with blankets, pillows, etc. where your children or the other children can go to regroup and get away from the other kids if they feel overwhelmed or are acting act. That way if your daughter feels a need to express her frustration (which she probably can't do verbally very well yet) she can go there and feel free to hit and bite the pillows, but you can teach her that it is not acceptable to do this to you or the other children. You should be able to more effectively explain things verbally to your 5 year old, however, make sure that each day once the other children leave your home that you have some extra special time built in for each of your own children separately, whether it's pushing them on the swing, reading a book, making a craft, etc. It may also help to make a chart using pictures and words for the schedule of the day, so that you can also point out to them what is happening next during the day and they can see that at 5pm the other children leave and then your special one on one time starts. You can also implement a simple reward system, using a chart and if they earn 5 stars or whatever you decide for good behaviors by the end of the week they get something special. You can read more tips on behavior and positive reinforcement.

An effective treatment program builds on the child�s interests, offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the child�s attention in highly structured activities, and provides regular reinforcement of behavior.  This kind of program generally includes: social skills training, a form of group therapy that teaches children with AS the skills they need to interact more successfully with other children; cognitive behavioral therapy, a type of �talk� therapy that can help the more explosive or anxious children to manage their emotions better and cut back on obsessive interests and repetitive routines; medication, for co-existing conditions such as depression and anxiety; occupational or physical therapy, for children with sensory integration problems or poor motor coordination; specialized speech/language therapy, to help children who have trouble with the pragmatics of speech � the give and take of normal conversation; and parent training and support, to teach parents behavioral techniques to use at home. This is a website link to Aspergers resources for therapy in your area.

It sounds like his parents are starting to become concerned about him since you reported that they are having their own "meltdowns" in response to his behavior. Have you told them that an Early Intervention evaluation is a free service to them? Most Early Intervention evaluations are provided in home, so they wouldn't need to take him to a doctor's office, etc. You can also tell them that once an evaluation is completed, if he is eligible, it is still their choice whether they want to begin receiving services for their child. The system is completely voluntary and parent driven and the therapists write the goals with the family and work on whatever the family is concerned about. An early intervention evaluation team cannot diagnose a child (since you were concerned with autism & fragile x, these can only be diagnosed by a psychologist or physician), they can only tell a family whether or not their child is showing any developmental delays. Right now, since you are his nanny, you are very important in this child's life and he is lucky to have you there. I would suggest that you draw on your past experiences to help this little boy with his behavior issues and speech and language skills during your time with him.

You ARE a therapist in this sense, and anything you are working on during his day to increase eye contact, decrease negative behaviors, work on motor skills and encourage speech and language skills constitutes therapy through play. As hard as it is, I would continue to every month or so, again gently express your concerns with his parents, and perhaps from your own point of view that even if they don't feel they need help working with him on behavior issues or speech and language, that YOU need someone to help and support you with this in order to continue to effectively work as his nanny. Perhaps you can even contact your local early intervention provider yourself (you can find State Links on our web page here: http://www.earlyinterventionsupport.com/resources/links/state.aspx and request a brochure to be mailed to either you or the family to try to get the ball rolling. It would be over stepping your bounds to contact the doctor yourself, but if there is a grandparent or another relative of the child that you could mention your concerns to, perhaps they could also help in persuading the family to pursue an Early Intervention evaluation. His parents may be shutting you down right now, but if they hear the same concerns from another source, especially someone in the immediate family, it may help toward getting them to address some of the issues.

You can also tell them to check out our " Parenting Tips and Info" section of our web page http://www.earlyinterventionsupport.com/parentingtips/default.aspx and from there they may choose to browse the section on "How Children Develop" which will allow them to see developmental milestones for an 18 month old, as well as "Red Flags" in those areas which may warrant an Early Intervention evaluation. I wish you good luck, you sound like a great nanny and you are already doing so much for this child, so you should feel good about that, even if the parent's choose not to obtain services for him at this time.

Rather than typing a list I am referring you to this page at our    Early Intervention Support website which details many of the    different therapies and treatments available for children with    autism, as well as listing links to many national and international    autism websites which you may find helpful: http://www.earlyinterventionsupport.com/diagnosis/List/Autism.aspx Without knowing your son we cannot recommend a specific therapy or    treatment method, however, the above link should give you a good    starting point for deciding on a therapy/treatment method which might    best benefit your son. Please let us know if we can provide any    additional information.

Keep in mind that there can be issues that present themselves at    home, but not at school or vice versa as in your situation. I am not    sure how your services work in the UK, but in the US, children who    have an IEP in place are already part of the special education    system, since an IEP is designed to address the various goals and    objectives that a child needs to work on in order to be successful in    all areas of development. Children who have an IEP/IFSP in the US are    already typically 25% or more behind their peers in at least one area    of development. I would also stress being very honest with his    teachers and calling a team meeting if possible to address the    bullying problem and how you feel this may have adversely affected    your son's school work and performance. Best of luck to you and I    apologize that I can't be more specific in offering more advice.

Does having 5 hours of physical therapy a week make a child    progress faster than having it once or twice a week? I can't really    answer that, it might for some children and might not for other    children. What I can say is that the philosophy of early intervention    is to not only work with the child, but to teach the entire family    how to work with the child so that the family can follow through with    weekly therapy suggestions and learn how to help the child on a daily    basis. Parents and extended families are the ones that make all the    difference in early intervention! You know your child best and you    are with your child 24 hours per day, we as therapists are there to    help teach you & your child. It is your follow through, not our 1-2    hours a week of service that creates progress and success. Early    intervention is not meant to be out patient therapy, we as therapists    cannot succeed with your child unless you are helping us succeed.</

You can judge quality of service by asking yourself if you understand your child's goals, both short and long term. You should have an IFSP in place for your child that clearly states what skills you as a family want your daughter to work on and achieve. Each therapist that comes to your home should have a focus to their session which is working toward these goals and objectives. You should ideally be a part of every therapy session and be doing "hands on" with your child with the guidance of the therapist. Most therapists leave progress notes at the end of their sessions which state what the child worked on that day, how the child is progressing and some "homework" for your family to work on for the week or until the next session occurs.

Your child and therapist should work well together and you should have a rapport with the therapist as well. However, this does not mean that your child will not cry during physical therapy or other sessions, since some exercises and therapies are "hard work" for the child and they learn early on that "hey, this lady makes me do stuff I don't like to do!".

Keep in mind, therapy is through play at this age, and play is very important. Therapy is play with a purpose. I emphasize the word "play" over the word "therapy". You do therapy with your child every day without realizing it. You don't need to focus on the word "therapy", but rather think that when you simply read a book with your child you are working on receptive language (listening and recognizing pictures) and expressive language skills (trying to imitate new sounds & words), cognitive skills (attention span & memory), and fine motor skills (pointing to pictures). If you are rolling a ball back and forth with your child you are working on visual tracking skills, fine motor skills, gross motor skills, language skills, etc. Children under age 2 typically don't tolerate sessions longer than an hour from early intervention and I am always careful about overwhelming children with too much too soon. You and your therapists as a team will be able to know what your child can tolerate and will be able to judge the progress she is making.

If you do not think your child is receiving enough service from early intervention, I would discuss this with your team of individual therapists. Some parents still would like more therapy for their child than early intervention provides, and so they seek out private therapy through a local hospital or clinic that is paid for by private insurance.

Physical Therapists, Occupational Therapists, and Speech Therapists are all required to hold a master's degree in that field. If one of these areas interests you, contact local schools to see if they have one of these programs. They are usually 2- or 3-year programs and require many science prerequisites. (My first degree was finance and business law, but I went back to a local community college to get all my pre-reqs and then went to the University of Pittsburgh for my master's in PT.) The other option is to become a developmentalist. In Pittsburgh, there is a master's in early intervention program, which allows you to work in the field of EI in the role of support services - supporting the recommendations of the licensed therapist (PT, OT, or SLT) and also teaching the family to work with their child. A lot of decisions, I know! Hope this helps!